This week Rebecca sat down with Kim Knackstedt, a senior fellow at The Century Foundation, where she serves as director of the Disability Economic Justice Team and director of the Disability Economic Justice Collaborative, both of which launched a little over one year ago in April 2022. Before coming to TCF, Kim served as the first-ever director of disability policy for the White House Domestic Policy Council for the first year of the Biden presidency.
They had a far-ranging conversation about what it looks like to apply disability as a lens across all economic and social policy making in the United States; the story behind the Disability Economic Justice Collaborative, going behind the scenes on the work discussed in the Collaborative’s one-year anniversary event, which aired on Off-Kilter earlier this month; and the end of the COVID-19 public health emergency and what it means for disabled people in the United States.
And continuing with the “self-care is political warfare” throughline from all of this spring’s episodes for the podcast, they also talked about Kim’s ongoing process of detoxing from the “destroy yourself for the work” culture of the White House and Capitol Hill; how she’s been rediscovering self-care in her own life as a leader within the disability community who also lives with chronic illness; and more.
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REBECCA VALLAS (HOST): Welcome to Off-Kilter, a podcast about economic liberation and what it will take to set us all free, powered by The Century Foundation. I’m Rebecca Vallas, and every week I talk with visionary leaders working to disrupt the off-kilter imbalance of power in the U.S. to build a society where everyone can thrive and experience the shared abundance we all deserve. And I had a ton of fun sitting down with our next guest, who’s a dear, dear friend and one of my closest colleagues at The Century Foundation as well as a national leader within the disability rights and justice movement, and that’s Kim Knackstedt.
Kim is a senior fellow at The Century Foundation, where she serves as director of the Disability Economic Justice Team and director of the Disability Economic Justice Collaborative, both of which launched a little over one year ago in April 2022. Before coming to TCF, Kim served as the first-ever director of disability policy for the White House Domestic Policy Council for the first year of the Biden presidency. We had a far-ranging conversation about what it looks like to apply disability as a lens across all economic and social policymaking in the U.S. as opposed to an afterthought; the story behind the Disability Economic Justice Collaborative, going behind the scenes on the work discussed in the Collaborative’s one-year anniversary event, which we aired on Off-Kilter earlier this month; and the end of the COVID-19 public health emergency and what it means for disabled people across the U.S. And continuing with the self-care is political warfare throughline from all of this spring’s episodes for the podcast, we also talked about her ongoing process of detoxing from the destroy-yourself-in-service-of-the-work culture of the White House and Capitol Hill, as well as how she’s been rediscovering self-care in her own life as a leader within the disability community who also lives with chronic illness, and lots more. I’ll note that we’ve got lots of goodies in show notes this week, so take a peek there for a whole bunch of resources and for how to connect with Kim and with TCF’s Disability Economic Justice Collaborative. And without further ado, my conversation with Kim Knackstedt. Let’s take a listen. [upbeat music break]
Kim, it is so fun to have you back on the show. I know you and I get to do lots of talking week to week, but it’s been a minute since we got to talk for the podcast.
KIM KNACKSTEDT: It has been! I’m so thrilled to be back on.
VALLAS: So, I think the last time that we got to have you on Off-Kilter was the tribute episode that we did for the passing of Judy Heumann, who is now a disabled ancestor and someone that we all learned a lot from and who really was a huge supporter of the Disability Economic Justice Team at The Century Foundation and also the Collaborative that we’ll be speaking about.
But before that—and this, I feel like, is sort of where this conversation is picking up from as we kind of anchor ourselves in time—it was a little over a year ago that I had you and also our colleague Vilissa Thompson, who’s not with us today, but who is here in spirit, on the podcast to talk about something that was happening early in 2022, which was the launch of the Disability Economic Justice Team at The Century Foundation, an exciting moment for us. And it also marked the launch of the Disability Economic Justice Collaborative, which we’re gonna get to talk about as well. But it feels like in some ways, we’re kind of picking up the ball from that conversation today because we’re getting to talk about one year on, what’s going on, on these issues, and what’s been going on with the Team and the Collaborative. I’ll note just as a programing note, we did air the one-year anniversary event for the Collaborative as an Off-Kilter episode just a couple weeks back. We’ve put that in show notes. But it felt like the right thing was to kind of come back and create some space to revisit and talk a little bit about what’s been going on in the first year of this team, because it really is kind of a unique experiment in how to do this work and also the first year of this collaborative.
But before we do that, we kind of have to take a few steps back, and we have to sort of say, well, why did we even start this team? Why did we even start the Collaborative? And that story really starts with an economic crisis facing the disability community in the United States that, of course, long predates but was pretty substantially exacerbated by the COVID-19 pandemic. So, Kim, maybe start us there with a little bit of what is the picture economically for people with disabilities, and why did we need to create a disability economic justice program at a think tank like TCF?
KNACKSTEDT: Yeah, absolutely. And it is wild to think that it’s been a year, one, that I’ve been at TCF, and two, that we launched the Team and the Collaborative. It seems like it was just yesterday in so many ways. And but yeah, taking that step back, I think it’s important to think about, we, you and I always talk about this, but we often say that we can’t just talk about all these issues in July for Disability Pride Month and the ADA anniversary. And I think that is part of this conversation, that we sort of had that moment of we have to actually talk about this all the time. And because often July comes around, everyone talks about it as the four outcomes of ADA. We’ve not met them, and so be it. And then we move on to August, and it all is forgotten. And so, that is part of this conversation.
And as I think we’ve all reflected, one of the really core outcomes of the ADA that has been unmet is economic self-sufficiency. And it is that sort of economic crisis. You know, we’ve made progress on independent living. We’ve made progress on—and I’m not saying met, but we’ve made progress on—full participation. We’ve made progress on equal opportunities. We have made very little progress on economic self-sufficiency.
VALLAS: And what you’re naming is really the pillars of the Americans with Disabilities Act, right? The ADA made some promises to people with disabilities.
VALLAS: Those are kind of the four core promises that you’re outlining. Keep going, but just wanted to make that clear.
KNACKSTEDT: Yeah, yeah. I appreciate that emphasis there. And yeah. And so, that’s where, when taking sort of this look back, it’s like why? Why has this been so hard? And I think at TCF we do—maybe this can go in show notes—we’ve done these fast facts. So, what is the kind of picture? And it’s that for the poverty rate for adults with disabilities is 22 percent, and that is twice the rate of non-disabled adults. And that’s pretty appalling. But it’s also, it’s not, you know, we talk about this a lot, but it’s not that it’s just the poverty rate. It’s that our actual system is working the way it should. It’s actually trapping disabled people in poverty, and it’s trapping people in all the ways, you know, pushing people down and keeping people there. And I think that is where we realized that we had to do something different. I think in the work that I’ve done in the past, it’s how do we start putting disability first and break the link of these systems from doing what they were supposed to do, which is literally trap people, and really take that step back to start moving forward toward economic justice and economic security.
VALLAS: Yeah, I really appreciate you grounding us in that, right? Because sometimes policy failures get talked about as like people falling between the cracks or people being left behind. But actually, what we’re confronting and what you’re really making real with some of those fairly blunt statements is we have systems that are designed [chuckling] not to work for people with disabilities, people with chronic illnesses, everyone who falls within that big-tent ADA definition of disability, which we also know includes folks with long COVID.
VALLAS: Which people with long COVID, also worth noting, have spurred the largest influx of new entrants to the disability community in modern history, right? So, really important to be bringing that population into this as well. But it’s not like it’s a bug, right? It’s a feature of our systems that people with disabilities are actually facing poverty rates twice as high as people without disabilities.
VALLAS: And just add a couple of other stats into the mix for folks who might be like, “Wow, those poverty rates. How does that actually show up in terms of people’s lives?” Well, we also see people with disabilities facing food insecurity rates that are 2 to 3 times as high as people without disabilities. We see that people who turn to homeless shelters on any given night, about half of them are people with disabilities. So, these disparities that are really baked into our systems really redound across the board when it comes to all the different ways that one might measure basic needs and whether they’re met, things like food and housing.
But Kim, with that as a little bit of some of the origin story, I feel like you started to get to it, and this is kind of the thread I really wanna pull on for this next chunk of this conversation, one of the things that I know is one of your favorite things to talk about and mine as well, which is how have we gotten here? Like, why is it this way? You started to mention it’s because the way that our policies have been shaped and that our systems have been built over time, people with disabilities just haven’t even been thought about in policymaking. Or if they have, it’s as an afterthought, right?
VALLAS: It’s like at the end of a policy process, as opposed to people with disabilities being a group that are actually front and center in the minds of leaders and policymakers who are making those decisions. And so, this really gets us into the origin story of the Team, the Disability Economic Justice Team at TCF, but it also gets us into why did [laughs] we think it made sense to do all this organizing of organizations, right, of groups to create something that is now called the Disability Economic Justice Collaborative? And that was because you and I thought it made sense not to just do things the way we were always doing them, but to actually say, what would it look like if we applied disability as a lens across all of our policymaking, economic and social and everything in between? Talk a little bit about that theory of change. And you’ve spent a lot of time in government. You’ve spent time in the House, you’ve spent time in the Senate, you spent time in the White House. You know very well how policy has been getting made up to now. How has that looked, and what kind of a shift would this mark to be thinking about disability as a lens?
KNACKSTEDT: Yeah, yeah. And I think you were mentioning there as well, historically, there’s a couple pieces here. Historically, people with disabilities have been thought of as a community to consult at the end of the policymaking process, if at all, rather than one, disability policy as a actual distinct policy area, an arena, to engage throughout all policymaking, and a community of people to embed in the policymaking process. So, that’s like two different areas I wanna unpack just briefly.
So, one, we have a mantra—I call it a mantra—of every policy is a disability policy. And I think that’s one piece. You could say every domestic policy is a disability policy. Every issue is a disability issue. However you want to frame that, it all is the same. Every single thing we do every day impacts disabled people because one in four adults has a disability. It’s the largest— I mean, again, we can start to pull apart all of this. You, every person listening to this knows a disabled person because disability is part of the natural human existence. And it’s also the only protected class of people that you can join at any point in your life and very likely will join, as we were talking about the other day, at some point in your life as you age as well. And so, there’s so many different ways to kind of think about this that we often don’t in policymaking. And it’s important that we think about, again, disability policy is an actual policy arena. Yet we, for so long in Congress, only ever had one or two people that’ve ever actually really thought about it as a policy. And so, that’s one big piece to think about. And those people usually are trying as hard as they can to bring that lens to all of the economic policymaking. But that is a, you know, pushing a rock up Mt. Everest type of a challenge when you’re going against all of the different members and all of their different priorities.
But then thinking about disabled people as a community to be consulted with and engaged with, that all the policies impact people and then thinking about individuals throughout the entire process is the other really important piece. And that we have to put disabled individuals at the beginning of the policymaking process, not at the end to tack in the word, “and including people with disabilities” every time we say anything about any other people throughout a bill. But actually, how does this policy impact people?
And so, I think those are two pieces that are really challenging. And if we start to bring a disability lens to all of our policymaking, it really starts to fundamentally shift how we do it. So, we could get into the curb cut example, but that’s really the core, is we start to curb cut our policy, and then all the sudden, all policy is much more accessible to everyone that we make it for.
VALLAS: Yeah, I actually, I think it would be useful to spend a little time on curb cuts ‘cause it’s a literal example. It’s also a great metaphor. I feel like every time—
KNACKSTEDT: It always works.
VALLAS: —I hear anyone talk about curb cuts as a metaphor, I always think about Bob Williams—
VALLAS: —who is really an elder in the disability community who many of us have learned from and who spent a very long time at the Social Security Administration, which was when I came to meet him first, many years ago as a sort of a baby legal aid lawyer. And he had written a big paper on Curb Cut Theory. And talk a little bit about what curb cuts are and their significance. People are probably familiar with curb cuts in the sense of they’ve seen them on the street or on the sidewalk. But talk a little bit about how they fit into this conversation as not just a literal illustration of what you’re talking about, but also a metaphor.
KNACKSTEDT: Yeah, absolutely. So, the idea is we’ve all experienced a curb cut. Again, it’s on the side, in the street. The idea is you get from the sidewalk to the street in an accessible way. Curb cuts were originally made from the ADA to make it more accessible for disabled people who use mobility aids or use a wheelchair. And but now, a curb cut is actually much more helpful for everyone because it helps the parent pushing a stroller, it helps the delivery person pushing a dolly. It helps the traveler pulling a bag, whatever it may be, you know, people riding those obnoxious scooters, whatever it might be. The curb cut now is actually the place that most people go and travel through to get from the sidewalk to the street, the street to the sidewalk. Curb cutting policy means the path that we make our policy that makes a more accessible pathway to the policy for everyone. So, maybe it is actually designed with the intention of supporting disabled individuals, but at the same time, it actually makes the policy more accessible to everyone because it’s actually gonna impact the lives of every single person in every single community in a way that will really change the outcomes for everyone. So, it’s a very distinct problem that was solved by this policy. But at the end of the day, it really solves problems for so many others because it was the most accessible option that could’ve been done.
VALLAS: Yeah, I love that. And honestly, we could do an entire episode just talking about curb cuts, but I think that’s probably a theme that’s gonna recur as we keep talking. So, back to some of the work that’s been happening and that you’ve been leading. I’d love to actually get a little bit concrete and give you a place to and a space to lift up some of the work that’s been happening through this collaborative.
So, as I mentioned, it started with organizing a whole bunch of groups, right, somewhere between 40 and 50 organizations now who are part of it, who span a whole bunch of different sectors within the policy and advocacy sphere. So, the opening kind of theory of the case was what if we got a whole bunch of think tanks and research groups that work on a whole bunch of different issues but who don’t focus on disability together in a room with a whole bunch of disability advocates who have mostly been kept away from quote-unquote “the room where it happens,” to go Hamilton for a second? And what would happen if we could bring all those people together and say, “How about we all work together? And how about we all work to bring disability as the lens across policymaking?” Because, of course, policymaking doesn’t just happen in a vacuum. There’s a whole set of actors who influence policymaking. And a lot of that happens at think tanks, and a lot of that happens at research institutions and advocacy organizations and everywhere in between. What has been some of what you’ve been most excited to see? What has actually been coming out of that work? Spoiler: the experiment worked, and the groups like each other, and everybody’s working great together! But what has actually been coming from this experiment of bringing all these different types of groups together around this theory of change?
KNACKSTEDT: Well, I agree. One, it worked. [laughs] So, I think there’s the moment, it was the first meeting we had last March, where we’re like, “Is this actually gonna work? Are people gonna talk?” And so, I think actually, one of the big takeaways is that, and what’s most exciting, is that everyone wants to engage with each other. The sort of the side conversations, the side engagements, the side collaborations outside of the spaces of—we’ll do air quotes—“virtual tables” that we’re creating, there are so many collaborations that are occurring that we are not generating. That is actually really exciting. And so, I think that is something that is probably most energizing for me is to see that, sure, we created a space, but it’s actually all the other spaces that are happening. And then now, policymakers are starting to see these collaborations. And so, it’s not just calling on one traditional group, it’s actually calling on multiple groups to come to the table. It’s like, “Oh, well, you’re part of that collaborative, so maybe a couple of you can come.” And so, not just, as we said, more people are getting in the room where it happened or happens. So, I think that’s one big takeaway.
I think the other is that everyone is hungry to learn. And as a lifelong learner myself, it’s fun to be in a learning space with other people who want to learn, because I firmly believe nobody knows everything. [laughs] And the more we can be around each other and engage in learning and say we don’t know everything, and then invite that conversation of like, we can learn so much from each other, it is very exciting to build a space where people feel safe enough to want to learn and engage in learning as adults in different positions, and then also build sort of the pipeline of learning. All of that learning that’s happening, I think, is actually really, really exciting, and it’s different. I don’t think there are a lot of places that are saying, “Come with us on a learning journey, no matter where you’re at.” And I think that is something that is really, really exciting. And I think—
VALLAS: Just I have to just hop in and say, as a Sagittarius Rising, who also loves you as a Sagittarius Rising, of course, you would describe yourself as a lifelong learner, and I feel the same way too.
VALLAS: But I hadn’t actually thought about that until you just said that out loud, why we’re both obsessed with the learning agenda as part of the work that happens. Sorry, just had to hop in and say that. [chuckles]
KNACKSTEDT: It’s like the best part. Well, and it’s, I mean, again, D.C. doesn’t teach you to be, I don’t know, open and humble. And I think in a place where we’re mostly engaging major think tanks and major advocacy organizations in D.C. where you’re expected to come to the table and know everything, I think the fact that we’re saying, “Come to the table and don’t know everything, and come to the table and say you don’t know everything” is like such a, it’s a very different reframe. And the fact that people are on this journey with us, I think, actually makes it so much more exciting. And I don’t know, it’s just it’s different.
And I think the other thing is that people wanna be, wanna join. Still! A year later we have more people sort of knocking on the door saying, “We represent this community. We don’t see that represented in your collaborative. Can we come to the table?” We know we don’t have communities represented, and we know we have gaps, and we know that that’s out there. And that the fact that we are still having people wanting to come along the space, even though we’ve existed for a year, I think that’s great. Because this could’ve just totally flatlined and fallen apart, and the fact that we have more people wanting to come and reinvigorate what is still going on, I think, actually makes it even more exciting.
And these three things that I mentioned aren’t things that we’re gonna publish a story about. We’re not gonna, I don’t know, go shout to the rooftops about. It’s like the internal. And so, that’s why it’s nice to be able to share this, ‘cause I think that’s the most exciting. It’s not the papers we publish, it’s not the commentaries, it’s not what we’re going to tell in the Hill. It’s like these are the internal things that I think are really exciting.
VALLAS: Well, that was actually a big part of why I wanted to do this follow-up conversation, ‘cause I feel like very rarely are there spaces where you get to pull the curtain back and say, how does the work happen? That’s a lot of what I feel like we try to do on this show is to say not just what was the cool policy that became law, right? Or what’s the bad policy that we stopped? Or what’s the problem that we’re trying to face? It’s also like, how does the work happen?
VALLAS: ‘Cause a lot of times I feel like it’s kind of a black box. You and I often talk about how outside of the realm of the policy world, people often don’t even know what is a think tank.
VALLAS: That’s one of the most common questions I get when people ask what I do. They’re like, “Oh! Well, so, but then, what is a think tank,” right? It’s like all of this is, it’s a total black box to most people outside of the policymaking realm. So, I love actually getting to pull that curtain back with you and say kind of how is the work happening?
One of the things that I’ve been probably most excited about from the collaborative experience so far has been some of the partnerships that have come of it, like watching groups like the Urban Institute, which because of the Collaborative’s support, was able to launch a whole disability project, which is amazing, right? Getting, watching them get to work with a group like The Kelsey, a really cool startup out in California that is disability-led and is all about people with disabilities and housing, right, and just an intersection that has never been focused on at this level before, watching them work together to say, how can a age-old institutional, legendary think tank like Urban work with a place like The Kelsey to more concretely, more tangibly, more intentionally put people with disabilities at the center of not just the conversation but also the policymaking and policy advising that that institution does of D.C. leaders? You know, that’s just one example. There are many. But that, I think, has been part of one of the things I’ve really loved watching as well.
VALLAS: The Kelsey has been on Off-Kilter before, and I’ll also plug a really terrific episode with a bunch of their team on their origin story, and we’ll make sure to put that in show notes, too.
But Kim, I feel like one of the things that probably is most, would be most fun to talk about in this conversation and also would be a really good follow-up to some of the disability-related conversations that’ve happened at various points on Off-Kilter would be to talk about something that you and I published with the Collaborative earlier this year that was really the outgrowth of a whole bunch of work on behalf of all of the groups, by all of the groups, co-created by all of the groups that are members of the Collaborative, from those think tanks to the research groups to the disability rights and justice groups and everyone in between. And that is something that we decided to call a disability economic justice policy framework.
VALLAS: And we’re gonna talk about what a policy framework is and what that looks like. But zooming out just a little bit, I feel like part of why this will be really fun to talk about is not just ‘cause you and I are huge nerds, and this is our idea of fun, but also because we asked the question, great, like, great to have all these groups coming around the table and saying, “We agree disability should be a lens across policymaking, and let’s work to make that happen.” But then it was, okay. Well, how do we do that, right? How do we actually have that influence? How can we, coming together through the power that comes through the numbers of groups organizing and working collaboratively, how can we send that message and have that kind of influence when it comes to a policymaking sphere that, frankly, is starting from less than square one on doing this? And how can we do it in a way that invites people in and that helps people learn alongside the groups and the members who are part of the Collaborative? And so, we said, you know what? How about, how about a policy framework? How about a document that actually asks the question, “What does it look like when we get to disability economic justice, when economic justice finally includes people with disabilities as a vision for our society?” And I would love to give you a chance to talk about what that ended up looking like and some of what’s in it. And I think the last time I referenced this on Off-Kilter was actually last fall in an episode with Chai Feldblum and Rebecca Cokley, who’ve both been friends of the Collaborative. And shoutout, as always, to Rebecca Cokley for being one of the core funders of the Collaborative in her role at the Ford Foundation. But talk a little bit about this framework and how it came to be and some of what is in it and your vision for it.
KNACKSTEDT: Yeah. Yeah, definitely. Yeah, this is one of the other things that I think I’m most proud of and excited about from the Collaborative that’s a little more public. And it’s funny ‘cause I don’t think we actually, when we were writing it necessarily expected to make it public because this came out of the policy pillar, one of our core five pillars of the Collaborative. And in those meetings I know we were talking about, well, how do we actually center all these different groups around some sort of policies and, you know, policy policies? And everyone came from such different framing ‘cause we had folks that were all about disability policy. We had folks that were not, that they were very much centered on one specific type of policy. And what we decided we didn’t want, ‘cause sometimes it’s always easier to start from what you don’t want than you do want, what we didn’t want is a document that was just a list of bills or regulations that we all wanted to fight for and against. Because it’s not evergreen, and the updating and the engagement on that was not what we wanted to do. ‘Cause again, we really wanted much more of a learning space and a growth place for everyone to be in.
And so, when we knew what we didn’t wanna create, then it became, well then, what do we want? [laughs] Which is the harder question. And then we decided, I mean, I remember this conversation so vividly. What we really wanna do is have values. What are the values we actually care about in policymaking? Again, this took us to how do we get disability at the forefront of policymaking? What are the values we need people to center on? If you’re a new staffer on a committee writing a bill on housing, what is the one value you need to center on to help you bring disability to the forefront of that policy? And that sort of got the conversation going. Well, then we need a framework centered around values, something that any policymaker can pick up, find the values that they need for the bill they’re working on, and use. And so, that’s sort of how it came to be. And I’m sure we can put this in show notes, but the idea was that “every disabled person” and then a list of values. So, I’ll read a couple of them as examples, but I’m not gonna go through every single one. There’s a lot ‘cause again, this is domestic policy.
VALLAS: Hey, go ahead and start, and we’ll see how many we get through.
VALLAS: But I feel like it’s good to spend some time on this ‘cause I actually feel like this is to your point about what we didn’t do and what we knew we didn’t wanna do of, let’s not have it be a document that lists every piece of legislation that we want to get passed.
VALLAS: Just to be really clear, it’s not to say that’s the wrong way to do policymaking.
VALLAS: But that is generally the only way that folks do this! It’s like—
KNACKSTEDT: There isn’t another way.
VALLAS: —the D.C. normal is like, organizations and coalitions have their lists of like, these are the things we’re for, and these are the things we’re against. But it only is within the realm of what’s already been put out as legislation. Very rarely, sometimes, but very rarely do you actually see someone saying like, what’s the vision that I’m looking to build outside of the realm of what’s already being talked about in Congress? So, yeah, so I actually think this is worth spending some real time on.
KNACKSTEDT: And actually, on that point, it gave us flexibility because we know the next few years in D.C. are gonna be tumultuous, right? We knew that actually, ‘cause we wrote this with the Collaborative last July, we didn’t know what this year would bring in the House and the Senate. But we were anticipating it would be a challenging, very likely a divided Congress. That was something that I think everyone kind of was anticipating, a divided government generally. This gives us the flexibility. We are comfortable taking this framework. I’m pointing to the side of my screen here, but [laughs] which no one can actually see as I pause and point. This document is actually something that we are very comfortable taking to Democrats and to Republicans. It doesn’t leave us in this awkward, like do we go and fight for this with one member or another member? And so, then when we got around to January of this past year, and we got pings from the Hill saying, “Well, what is your collaborative really fighting for this year?” we didn’t have to wait for the Speaker to be named and the agenda to be built. We said, “Well, here’s our policy framework. You can build your priorities around our policy framework.”
VALLAS: Yeah, I love that.
KNACKSTEDT: So, it was the quickest out of the gate with sort of our core value-based priorities.
VALLAS: So, take us through how it starts, ‘cause I think the opening is actually a great place to start. And then lift up any examples that you want in terms of specific policy areas that it gets into from that values perspective.
KNACKSTEDT: Yeah. Yeah, yeah. So, the idea is anyone can use this, whether you’re a policymaker, advocate, funder, practitioner, whatever it is. So, you can find yourself in the values. So again, the idea is each of these that I’ll read starts with, “Every disabled person.” So, that’s kind of the start. So, “Every disabled person”—and this the first one—“can live free from disability-based discrimination as well as discrimination based on multiply-marginalized and intersecting identities such as race, gender, including sexual orientation and gender identity, immigration status, and religion.” So, that’s one. And we really wanted that to be at the top. Discrimination is the core piece kind of across everything else.
KNACKSTEDT: So, that’s really the first one.
KNACKSTEDT: And then we moved on, and the rest sort of can be at any, they’re not in any hierarchy. There’s no order for the rest of them. They are just all the different ones. But that one was really specifically at the top. So, “Every disabled person has accessible, affordable, stable, safe, and quality housing. Every disabled person has access to reliable, affordable, and accessible transportation. Every disabled person can live independently with dignity, access to support in the community, and access to culturally and linguistically appropriate care and services at their direction. Every disabled person has access to the health care they need when they need it, and from the providers they want to be served by, including primary and specialist health care, sexual and reproductive health care, dental care, mental health care, medication, telehealth, and emergency care. Every disabled person has access to adequate, nutritious, and culturally appropriate food. Every disabled person is provided a high-quality, equitable education in an inclusive educational setting from early childhood to post-secondary education, including unaffordable higher education. Every disabled person can find and retain equitable employment at competitive wages in integrated settings and with appropriate accommodations and paid leave, including access to self-employment and entrepreneurship opportunities. Every disabled person has direct, equitable pathways to attain economic security and mobility through building wealth and savings. Every disabled person has access to an equitable public benefits system that provides a robust social safety net adequate to ensure a basic, dignified standard of living and free from intrusive barriers to work, savings, and marriage.” Do you want me to keep going, or should we…?
VALLAS: I think people probably get the idea of what this is. We’re definitely gonna put a link to this in show notes. So, for folks who wanna explore this more in depth or who wanna use this or share this, or who wanna follow up and actually ask questions and engage on this, we would love to hear from folks, and Kim in particular would love to hear from folks. So, definitely reach out and get in touch. But yeah, I just, again, with why we did it this way and part of why I think it’s just really powerful to bring it into this broader conversation, you mentioned by getting out of talking about just individual pieces of legislation, it makes it an evergreen document, which is helpful from a collaborative management standpoint, right, ‘cause we’re not constantly renegotiating like, what’s our list? But there’s also, I feel like there’s also a, there’s a bigger picture value to doing it this way that I feel like it’s also just worth saying, which is that the work the Collaborative is seeking to do, and I know the work that this team is also seeking to achieve at The Century Foundation, it’s bigger than any one Congress, right?
VALLAS: It’s bigger than any five-year period, right? This is work that is work that will take many years. And it’s sort of being in it for the long haul, so to speak, because it’s radical transformational work. And I feel like Ayanna Pressley said it well in the launch event for the Collaborative a year ago when she said, “We’re not fighting for scraps. We’re fighting for liberation,” right? And that’s really what this show seeks to explore week to week, is, what does economic liberation actually look like? And so, I think just zooming back out to how this framework is intended to complement the work that goes on within policymaking spheres in Washington, D.C. and elsewhere all the time, this is our effort—this is the Collaborative’s effort—to say, what does it look like when we get to a society where economic liberation has actually been extended to people with disabilities? And so, that’s gonna be bigger than any one Congress or short-term campaign plan. That’s the work of radical imagination, because this is a society, what you’re describing and what’s described in that document, is a society that has never existed before. Because we are still in a place where our society is just not built for people with disabilities. So, that’s part of why I was excited to bring this in and appreciate you lifting up some of what went into putting it together.
I’m gonna pivot for the next chunk of our conversation just to give you a chance to talk a little bit about something that’s very timely right now. And you actually just wrote a piece about this for TCF with the new director of health care reform at The Century Foundation, who actually just started a few weeks ago, Tara Oakman, who is awesome, who just joined from the Robert Wood Johnson Foundation. Welcome, Tara. We think you’re awesome already. But Kim, that is the public health emergency around COVID-19 as a pandemic was declared over. It’s been declared over now by multiple parts of the federal government. And so, I wanna give you just a little bit of a chance—and you write about this in the piece, which we’ll include in show notes for folks who wanna dig into this more deeply—but talk a little bit about what the ending of the public health emergency means for the disability community. And then we’ll spend the rest of our time talking a little bit about self-care.
KNACKSTEDT: Yeah. Yeah, that sounds great. Yeah, it’s officially declared over as of tomorrow, and then the global emergency was already declared over. So, there’s all those different pieces. But I think that the takeaway from the ending of the public health emergency is that COVID’s not gone. [laughs] The virus doesn’t magically go. I think that’s one piece missing from the whole conversation, which Tara and I write about our piece, is just because we say, “Oh, well, the emergency,” which I think is the key word here, “the emergency is now over,” does not mean the virus has like poof, gone out of existence. It’s not like fairy godmother came and waved her wand, and the virus has disappeared from our lives. And there’s good things and bad things about all of this. So, I do think it’s fair to say—and we’re members of the community, so we are able to say this, too—we are moving into a time of less of a literal emergency in a sense of we now have vaccines that work, we have antivirals that work, and we know how to respond if we do the things that we know work. That’s a big if. There’s a caveat there. And so, as far as the response to the COVID-19 virus, we know better how to respond to it. When we use all the things we know, we can keep people safer when those viral rates fluctuate throughout the year. Because, again, just because the public health emergency is over does not mean we’re not gonna have a bad fall and winter because, again, everyone goes back inside. We all breathe each other’s air, and the rates will increase again because that is literally how viruses spread. [laughs] Just like the flu. People have to get vaccinated. They have to do all those things. Prevention is key.
The problem with ending the public health emergency is that we learned a lot. We learned how to do things right. We learned how to do things wrong. We also had really good policies enacted that are now going away. And so, that is a little bit of the challenge with the public health emergency ending. There are things that are linked to the public health emergency that now stop. And as we just said in the framework, a fundamental value is that people have access to care. People should have access to caregiving. And ending this public health emergency, we’re actually gonna lose that. And that a lot of this is gonna be up to states to continue some of these policies. ‘Cause so much of the emergency waivers were on states, and they can make choices around applying for long-term waivers under Medicaid, all of those pieces. But given that so much of it is up to states, there are many states that are not gonna continue the good policies and practices that we know worked to keep people safe and healthy. So, people are going to lose access to care and caregiving, and that is a problem.
And it is true from any federal policy standpoint, you can’t keep a public health emergency just always, because then what happens if another pandemic hits? We need a way to respond and react to things in the future because it’s really not if another pandemic hits, it’s when another pandemic hits. We need to be able to respond to that, but we also need a way to keep the good practices and policies in place and push states to do that to care for its constituents. And so, now we’re in this, like a little bit of limbo time of how can the federal government get states to do the right thing and support its people, and then also take the lessons learned that prevention is key and move from the constant reactive state that health care policy is in and move to that prevention state? And I think that is the place that we’re gonna just see: Did we take away something from the silver lining of this pandemic and learn lessons, or are we just gonna go right back to where we’ve always been?
VALLAS: Yeah, I think that’s beautifully put, right? Because while obviously, this has been just an incredibly challenging, a quite literally lethal pandemic, right?
KNACKSTEDT: Lethal, yeah.
VALLAS: Millions and millions of people who’ve lost their lives who are no longer with us. Millions of families impacted, right? Pretty much no one is untouched at this point by the pandemic.
VALLAS: And if we’re able to at least experience the process as something we can learn from, which people have various feelings about silver lining framing, but the least we could do is learn some lessons from this experience.
VALLAS: Because, as you said, it’s not like this is just the end, and we’re never gonna experience anything like this again. If we were to apply that mindset, we could make real policy changes that would actually be really good for people, whether or not we’re in a pandemic, right? So, one really glaring example to me is I would hope that a pandemic lesson we learned is that it’s really, really bad policy and really inhumane to tie basic living standards like health care and food to work status, right?
VALLAS: Because that’s so fragile, it’s so precarious, and people move in and out of work attachments, especially when you have huge impacts on the economy, but also just in normal life outside of a pandemic. And yet things like time limits and work reporting requirements for people who are seeking to access programs like food stamps, right, are returning because we haven’t, we seem not to have learned that lesson. We seem to think that, oh, no, let’s just go back to what was actually a pretty bad and dangerous policy before even though we, I would hope, have learned from this pandemic experience that it’s really bad policy, and it’s really bad for people. But that’s an episode we’re gonna do at some point down the road, ‘cause that’s an issue itself that deserves a lot of attention.
And Kim, I wanna spend the rest of our time talking a little bit about self-care. This conversation comes in the course of a series of conversations we’ve been having where we talk, yes, about policy and the issues that people lead on, but also importantly about what it looks like for self-care to be understood as political warfare. And you are a leader within the disability community in the United States. You’re also someone who lives with chronic illness, and you’ve talked about that on this show. And this is something you and I actually talk about a lot off the air as well. And so, I’m excited to bring that conversation into the podcast a little bit in our last chunk of this conversation. So, as a little bit of a segue, one of the things that you and I talk a lot about off the air is the process that we’re both at different stages of moving through of sort of—I’m gonna use the word “detoxing”—detoxing from some of the ways that D.C. and the kind of D.C. work climate I hesitate to say “requires” but certainly encourages people to show up in relationship to this type of work. It’s sort of a, there’s a D.C. work mindset that we’ve been in different stages of trying—
KNACKSTEDT: A vibe.
VALLAS: —to detox from. A vibe, a lifestyle. There’s different ways maybe you could put this. You’ve been, as I mentioned, transitioning from several years on the Hill as well as most recently a year at the White House, working as Biden’s first-ever director of disability policy on the Domestic Policy Council. And my experience has not been on the Hill or in the admin, but working for kind of very fast-paced, politically connected think tanks like the Center for American Progress and others, where work/life balance has not exactly been top of the list for how people approach their relationship to the work. So, with that said, as just a little bit of kind of entrée here, I’d love to give you the chance to talk a little bit about what that detox process, that transition process has been like for you in the years since you’ve now come to TCF and made that transition. White House jobs don’t exactly allow for self-care, so talk a little bit about what that process has been like.
KNACKSTEDT: Yeah. Well, kind of connecting from a public health emergency and COVID, one of the things I was talking recently about sort of like my trajectory at work and all of that, and I was talking to the group about working on the Hill during the start of the pandemic. And I moved directly from that into the White House role. And I never actually had time to sort of process I’ll actually call it trauma of when we would get the flood of constituent calls to our personal cell phones at all hours of the day telling us about their friends and their family dying. And at the time, we had no vaccine. We had a hope of a vaccine. There was nothing we could do. And we didn’t know where we were at with the election, all of the above. And all we could do was say, “I don’t know the answer.” And that was, I mean, 2020 was one of the hardest years of working on the Hill, I think if you ask anyone. You were also alone. You couldn’t go see anyone, and you’re getting this just flood of calls, again, and there was no stopping them. And so, I never really got time to actually process that before then I moved right into working in the White House. So, there was…. And I didn’t even get to sort of take a beat. And so, that’s still been something that I am trying to kind of detox from.
But then, yeah, the White House role, it was great stepping into the role of director for disability policy, which was so new, and there was a lot of okay, I’m creating a policy role. But then also, how do we make the White House more accessible? And we did a lot on physical accessibility. What was still a learning curve was actually supporting people in the White House around accommodations. And that is still a learning journey that I think the White House is on, because as I was trying to do all these things, I did more and more, but I didn’t have a chance to say, “I can’t do more.” And because if I didn’t do more, then the White House would’ve been less accessible for everyone else. And so, there was sort of like that push and pull of if I do less, then less gets done for other people. So, what are the accommodations I need to support myself? But if I take, if I actually say like, “No, I can’t do that,” which isn’t really an option always, but then something breaks for somebody else. And so, that is a really, really hard place to be in of you can’t really put yourself first, even though you know how to advocate for yourself. And that is a place where I’m still learning now, a year later that I’m allowed to say no.
My May, I have a planner that I write goals in for each week and each month, and my May goal—again, this is more than a year later—is to say no more. And even if I wanna do something, to look at my time, I’m very real. I’m very realistic with my time. But I also, that doesn’t always mean I say no to things. I find ways to fit everything in. And so, my goal for this month is to say no and to use the time that I would’ve allocated to doing more things, to sitting outside on the porch and having a cup of coffee and reflecting. Because I can always make something work, and I can always stretch myself for somebody else. But I think for my own self-care and myself, I have to learn to just, it’s okay to say no and once in a while put myself first. And that is a skill I’ve never learned, and it’s something for my own health that I have to learn. I think I sound horrible today because I think my allergies have turned into a sinus infection, which is probably gonna turn into bronchitis, which will probably turn into a lung infection because that is my chronic illness. And if I don’t actually say no and take time for self-care, it’s gonna be really bad. And so, that is where I’m still very much learning.
VALLAS: I appreciate you getting so real and personal in lifting up not just what some of that transition processes look like, but even just the challenge of learning how to say no even at this point in your mid-to-late 30s, right? This far along in your career, saying no is, especially for women and people who identify as women and femmes, it’s really hard.
VALLAS: And we’ve talked about this as kind of an ongoing theme throughout these self-care conversations on Off-Kilter. I plug it a lot, but I’ll go ahead and plug again the conversation with Vilissa Thompson about boundaries! Because she speaks beautifully and with great wisdom about what it looks like to actually engage in boundary work, especially when it’s not something that we have been conditioned to feel like we’re allowed to do. Just pulling on that thread a little bit further, and as someone who tries to be a supporter for you in saying what I often think of as sacred noes, Aisha Nyandoro in the launch episode for this series called them joyous noes, right? So, lots of folks, I think, have ways to reframe the no that helps us feel like it’s within reach.
But you alluded to this, and I just wanna give you a chance to sort of even speak a little bit more to it. It was just such a big deal that the White House created the job that you were in, right?
VALLAS: And it’s really worth saying that. This was the first time that the White House had ever had a position in the federal government—but especially at the Domestic Policy Council, which is a very, very important power center within all of the federal government and within the White House—this was the first time that the White House had said, you know what? We actually need a disability position, one that is focused on this, one that’s not just about like, “Let’s have some outreach to the disability community and tell them we hear them.”
VALLAS: But it was actually focused on disability policy. Really, really big deal. And yet obviously, it’s a really big problem if the job exists, but accommodations are not an option, right?! And the person who’s in that job knows that they’re not an option. That was part of why you needed to leave the job after, much as I know you would’ve loved to have stayed. Because your health was deteriorating, and it was a destroy-yourself-for-the-work job and had to be, the way it was set up.
VALLAS: Is that a thing that you think that there is ever a realistic chance of seeing change? I hear you diplomatically saying the White House is on a learning journey and aren’t we all, back to where we started this conversation. But it’s obviously true not just of a position focused on disability policy, but of any positions within the administration, right, if we want disabled people to be able to be part of making policy and making decisions and shaping our society in a way that anyone who says that we care about diversity and equity and inclusion and accessibility would say we should have, do we ever actually get there? Is there a chance that we could see that kind of a shift within the federal government or a place as fast-paced as the White House?
KNACKSTEDT: I’m optimistic. I mean, I’m usually more of a realist, but I do optimistically say yes. I do think we can get there. I think part of it is that there’s not really an understanding still of, fully, there is— Now we’re at a place where people are like, oh, wow. Disability policy is literally everything. And I actually credit Ambassador Rice for that, right? She was great at being like, okay, where does this role even fit in DPC? And I was like, Bridge to Justice Equity Team, that. There. Fits there because it’s across everything. And then she gave me a lot of bandwidth to be like, it’s this and it’s this and it’s this and it’s this. And then she’s like, well, can you do this? And like, let’s do disability there. And it’s like, yes, let’s do that. So, there was, I mean, I also have a personality of where I’m like, I will do it all, and that’s fine. And so, there’s a little bit of that too.
But I think there has to be this realization of, as we started out with, that every issue is a disability issue. That means not, like…it’s a team of people. You cannot have one person cover all domestic policy for disability. That is a huge portfolio. There are so many agencies, not just Cabinet agencies, there are so many agencies. The number of meetings you have to hold just to stay connected to the agencies fills your entire day, and then you have to actually do your work. And so, ‘cause you can’t just not talk to people. And so, that’s really, I think, where there’s been this like, I do think it’s a learning journey of nobody really knew what disability policy was, I mean, from a very basic standpoint because most people don’t, as we mentioned. And so, now that there’s this like, oh! Wait. This is what disability policy is. It’s actually everything. And then a sort of like reset of, well, maybe there needs to also be a fellow supporting this role. Maybe it’s also an intern. Maybe then it’s a junior staff. I mean, there’s no money when you work at the White House. Just to be clear to anyone else listening, it’s pennies. But when you, if you could ever build that up a little bit more to get some more help, I think that actually, you could then open up opportunities for then people to say, “Okay, I need to take a day to go do my infusions. I need to stop working at 6 PM because I actually have to sleep tonight.” And then you can start to build in additional accommodations from there and a little bit more self-care. But I think part of it is this actual understanding of that disability policy covers every single thing the White House does, and there really wasn’t any understanding of that.
VALLAS: So, some free advice for the White House personnel folks, if anyone’s listening, about how to staff this portfolio a little bit more adequately. And of course, there’s a lot of applicability to what you’re saying to Capitol Hill and other places as well, where staffers have portfolios that are absolutely ridiculous, whether or not they have a disability or chronic illness that might require accommodations on top of what normal humans need just to exist and do the work sustainably.
Kim, we’re gonna run out of time, but I’m gonna just give you one last opening to share any other self-care practices that you’ve been discovering or rediscovering on the other side of the White House and the Hill that you’ve been finding are important for you and for your sustainability in this work.
KNACKSTEDT: Yeah. You know, I think, well one, sleep. I know that sounds basic. But I think I really value my time to sleep, and I don’t let anything get in the way of sleeping. And I know anybody listening is probably like, well, duh, that’s so obvious. But I think when you come from a culture of go, go, go, go, go, you don’t value your sleeping time, and you’re willing to cut into it for work. And now I have, I use my phone where it tells me when I need to be winding down, and I follow the alert that I need to be in bed. And then I sleep sometimes, I sleep in sometimes in the morning, and that’s okay. And that is something that I really care about, and I don’t let anything get in the way of that. And that is like the number one self-care thing that I really, I don’t check my phone if I wake up in the middle of the night no matter what, which was a very bad habit that I got into. I was checking email in the middle of the night. And so, that is something I really, really practice.
I also take time every morning to lay out my day and make sure I have time in the day to not be on the computer and to get away from the computer. And if I’m at home, take a little walk. If I’m at work, just get up and go talk to people. But really stepping away from the work for some time throughout the day. And then I sign off. Any, I have a time I, in that morning, I know the time of day I’m going to sign off. Sure, there’ll be things that come up I need to check an e-mail on. That will happen. But I really find a time, and I know at that time that I’m going to sign off for the day. And then at that point, I’m not back on my computer unless there’s absolute emergency, which there are very rarely think tank emergencies. And that is the time when I’m done. And I know that’s the time, and I stick to that time, and I’m very careful about that. And that protects me ‘cause the work will always be there. There will always be more work to do, and I can come back to it tomorrow.
VALLAS: I love that. And I know there’s a lot more that we could bring in as well. But I just kind of wanna close on the note of something that has also been very timely for both of us and for our team, and also is something that you and I went through last fall when we both got COVID around the same time. And we had a good run. We had a good run before we got it, but we finally did get taken down last November, basically. And that is not working when you’re sick.
VALLAS: And that’s a conversation you and I’ve had a number of times because just part of that destroy-yourself-for-the-work mentality often is that well, you work while sick. It’s a badge of honor. It’s like, oh no, the work can’t stop, right? But that’s a shift I’ve seen you make as well that I know I’ve tried to encourage, that you also reinforce in me, right? It’s like checking in, in the morning and being like, “I really feel like garbage today. I actually need to rest.” And then saying, “Great! Things can wait.” And I have to say I really value and appreciate you as a colleague and as a friend on many levels, but you supporting me in making that shift as well has been really helpful to me. And it’s something I will always seek to support you on and which we currently have a team member who’s out sick, and we’re supporting being sick and resting when sick. Because repeat after me, working while sick is not a thing or shouldn’t be if you’re in a job where you’re allowed sick time. We know that that’s a glaring hole in our social insurance framework as well, which we’ve talked about in other episodes, too. But we’re gonna have to leave it there.
Kim, this has been super, super fun for me getting to kind of talk with you a little bit about the work, but also some of the work behind the scenes and also some of your transition. It’s been amazing having you at The Century Foundation. I love working with you every single day. And folks should check out lots more in show notes about things we’ve been talking about, ways to get involved with the Collaborative, ways to connect with Kim, and a newsletter and more. So, check out show notes. Lots in there. But Kim Knackstedt is director of the Disability Economic Justice Team at The Century Foundation, and she’s also the director of the Disability Economic Justice Collaborative, which The Century Foundation is part of and plays host to. Kim, thanks so much for taking the time. [theme music returns]
KNACKSTEDT: Thank you. So glad to be here.
VALLAS: And that does it for this week’s show. Off-Kilter is Powered by The Century Foundation and produced by We Act Radio, with a special shoutout to executive producer Troy Miller and his merry band of farm animals, and the phenomenal Kings Floyd, who keeps us all in line week to week. Transcripts, which help us make the show accessible, are courtesy of Cheryl Green and her fabulous feline coworker. Find us every week on Apple Podcasts, Spotify, or wherever you get your pods. And if you like what we do here at Off-Kilter Enterprises, send us some love by hitting that subscribe button and rating and reviewing the show on Apple Podcasts to help other folks find the pod. Thanks again for listening and see you next week.