This week, Rebecca took a break from Off-Kilter’s regularly scheduled programming for a sit-down with the newest members of The Century Foundation’s brand-new Disability Economic Justice Team, which officially launched last month. Kim Knackstedt comes to TCF from the Biden administration, in which she served as the first-ever director of disability policy on the White House Domestic Policy Council, after many years as a staffer on Capitol Hill and before that, as a special ed teacher. Vilissa Thompson is the founder of Ramp Your Voice!, a former licensed social worker, and a long-time thought leader in the disability community at the intersection of race, gender, and disability.
For more on TCF’s new Disability Economic Justice Team:
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REBECCA VALLAS (HOST): Welcome to Off-Kilter, the show about poverty, inequality, and everything they intersect with, powered by The Century Foundation. I’m Rebecca Vallas. And this week we’re taking a break from Off-Kilter’s regularly scheduled programing for an extra special episode with two incredibly brilliant advocates and changemakers whom I’m incredibly excited to have on the pod, Kim Knackstedt and Vilissa Thompson. You’ll hear from them momentarily. They’re the newest members of The Century Foundation’s brand-new Disability Economic Justice Team, which I am thrilled to announce officially launched last month! And I’m honored to get to work alongside them as we build out this work at TCF.
So, without further ado, Kim, Vilissa, thanks so much for coming on the podcast. And I know we’re gonna give you each a chance to introduce yourselves, but I’m just really excited you’re here! So, welcome!
KIM KNACKSTEDT: So thrilled to be here!
VILISSA THOMPSON: Definitely. Thank you for having us!
VALLAS: You know, we really should’ve done this at an hour when it would’ve been appropriate to also have drinks while we record.
THOMPSON: [laughs]
VALLAS: I regret deeply the scheduling of this podcast today, but we’ll just have to—
KNACKSTEDT: I agree.
VALLAS: —[laughs] we’ll have to suffer through. So, let’s get right into it ‘cause there’s a lot that I know we wanna talk about, and I’m just really excited and appreciative to both of you for taking the time. So, the place I generally like to start these conversations is to ask how each of you comes to this work, your pre-TCF life, in this case. And Vilissa, I’m gonna start with you. Talk a little bit about how you come to this work.
THOMPSON: Yes. Well, my background is in social work. So, I’m a macro social worker, which means I look at the way communities and systems interact with each other and kind of where the gaps are within that. I have a lot of micro social work experience when it comes to working with people, families, and groups. So, with me, it’s a unique combination of where I understand those gaps from the personal level as to how systems and organizations and communities impact each other, and then what are the gaps within those bigger entities? And how can we support people who are the decisionmakers in our society so that those of us in these communities can thrive and not be heavily impacted? So, that’s just a little background as to how I got here.
This work is something that I did not have in mind [laughs] when I went to grad school. I wanted to be a therapist, and that changed with a lot of things. But I really love what I do in developing a body of work that combines social work with disability activism with intersectionality and just really being able to do a host of different things that really matter to me at this time.
So, I am just really thrilled to be at TCF to bringing all those scopes and those identities and that body of work with me that allows me to continue to do the things that I love, you know, really fight for the rights for disabled people, including myself, as well as ensuring that disabled people know what those rights are, how to empower themselves, how to just really not feel so powerless when we think about how these systems can really make us feel less than. So, for me, it’s just about ensuring that people have the tools that they need in full, and just to be a part of that effort.
VALLAS: Well, and I could not be more excited to have you now, or a part of you at least, at The Century Foundation helping to build out this work. I’ve had the good fortune of getting to work with you in some of the other hats that you’ve worn it at different points, including the Disability Justice Initiative at the Center for American Progress. So, you’re no stranger to the think tank world, but you’ve worn lots of hats. I know we’ll get into several of those and how they inform your perspectives on policy and so much more.
But Kim, I wanna bring you in next. Same question to you. I’d love to give you the chance to talk a little bit about how you come to this work. It’s a little bit of a different road than Vilissa’s.
KNACKSTEDT: Yeah, absolutely. And I’m thrilled to be working with Vilissa and you as well, Rebecca. And yeah, it’s funny. Somebody made the joke recently that I beat the land speed record through federal government work recently. So, most recently, I came from the White House as the first director in disability policy on the Domestic Policy Council. So, I was there for 14 months, started at the beginning of the administration, and then just joined TCF about now three weeks ago. And really, an incredible experience at the White House and getting to set the foundation for disability policy really from the White House’s perspective and across the administration, standing up interagency policy committees and working with all the different agencies on the work that they were doing and kind of that agenda setting from there. Which I know we’ll get into as the future of our work as well.
And then, really, before that, had some great years on The Hill. So, right before going to the White House, I was with Senator Patty Murray’s team on the HELP Committee and for a little over a year and really helping to think about disability policy from the HELP Committee perspective really across the Senate. And prior to that, with Chairman Bobby Scott on Ed and Labor. And so, working with two powerhouse members on the Hill and getting to really help think about for Democrats what disability policy looked like.
I came into the work of the federal government right before that from my Ph.D. at University of Kansas and really coming with a systems-change kind of perspective and thinking about what is disability policy, and how can we make a difference from my work as a Special Education teacher. And what could we, what is this lever of federal policy, and what can we really do to try to make some big changes? And so, now getting to kind of apply that across all of domestic policy through all of these years has been an incredible opportunity. And then being able to think about us, as a person of chronic illness, how to actually apply my own lens to that and think about the rights I’m fighting for personally as well has been a really great opportunity.
VALLAS: And I could not be more excited to have you at TCF as well and helping to build out this work here, too. In a lot of ways, I sort of feel like the three of us as this team are kind of the beginning of a joke! We were saying this in a meeting earlier this week.
KNACKSTEDT: Yes.
THOMPSON: [laughs]
VALLAS: Where you’ve got the, you add me into it, and you’ve got the chronically ill lawyer and the disabled social worker and the chronically ill Special Ed teacher walk into a bar, right?!
KNACKSTEDT: [laughs]
VALLAS: And it’s like, well, meet TCF’s Disability Economic Justice Team! No, I say that in jest, but I say it to some extent with a little bit of a kernel of real kind of seriousness there, because I’m really excited about the incredible set of perspectives that this team brings together, both through lived experience of disability and chronic illness, but also so many different interactions and connections to and perspectives on and experiences with the many systems that are so important for people with disabilities, many of which are incredibly problematic and need a lot of change. And so, just so much just knowledge and experience between what each of you brings. I’m just very, very excited this team exists!
KNACKSTEDT: [laughs]
VALLAS: But I will set my excitement aside so we can continue with this conversation for the podcast. And I feel like a place to go before we get too far along with this conversation is we need to ask the question, what is disability economic justice, and lay a little bit of that foundation. So, I’m gonna turn that question to each of you. It’s in the name of the team, but it has some pretty specific resonance with certain components of a policy agenda that, until pretty recently, nobody realized needed to have disability as a lens across it. That has changed to some extent in recent years as we’ve heard the likes of, say, Ayanna Pressley or Elizabeth Warren say in almost every opportunity that they have, “Every issue is a disability issue.” But that’s something of a new development for that level of awareness to really enter the policymaking sector. So, before we get too far with this conversation, Kim, I’m gonna turn it to you first to take a stab at defining disability economic justice, which will be a nice entry point into talking a little bit about what this team is focused on.
KNACKSTEDT: Absolutely, yes. And I think we’ve talked about we need an infographic to really show this, and that’s kind of how my mind works, is in a visual form. But I’ll try to use my words as best I can here. I think disability economic justice is really everything that helps an individual really try to kind of achieve a happy, successful life. And so, I think we’re thinking about it in terms of housing, employment, transportation, food, health care, technology, education, community living, access to benefits, financial security, and savings. I think the list can go on and on, but it’s really the entire life span that kind of feeds into economic justice and really, an agenda that looks forward and says, how can we think about all of these different pieces together to help to achieve a life that is lived in the community successfully and fulfilling? And how can we do that through administrative action, through policy, through legislation, and through data collection? What are all the different pieces that are needed across these different pillars to achieve economic security? And that’s just a start at trying to define it. But I think it’s a tangible concept that I think we were trying to kind of lay out in a really thoughtful way. So, I don’t know if Vilissa has more to add there. Yeah. [laughs]
VALLAS: It’s a great start. And that’s exactly where I was gonna go. Vilissa, how do you wanna build on that? ‘Cause it’s a good set of building blocks that I feel like, Kim, you’ve started to lay out there.
THOMPSON: Yes, definitely. I think for me, thinking about it demonstrates that disabled people have economic power, which is something that we don’t really consider our community to have. Because we are and have been overlooked by the structures that make the decisions as to who gets what and how, from our federal government when it comes to benefit supports to local governments as to the type of programs they support, whether it’s transportation, employment, if we are even considered or not. And I think that realizing that we do have economic power is so important because we are the largest minority group in this country, which means that we should have a significant power bloc in that.
But there are so many barriers that are in place that strips us of that power, some of which Kim mentioned when it comes to employment, education opportunities, transportation, housing, things that in some ways are fundamental rights for us to be able to access, but due to discrimination, due to biases both in the community as well as systemic, they can really hinder our ability to thrive and not just barely make ends meet. So, I think that is something for me to let disabled people know who have felt left out of the conversations that we are a part of this, and we should demand more and expect more when it comes to how we are able to support ourselves and be fully a part of our communities and the society, that we have a right to be there.
VALLAS: It’s a really, really, really good way, I think, of putting it, right? Because in so many ways, economic justice is not just about dollars and cents, right? It intersects with the place that one occupies in society. It intersects with and is the opposite of marginalization, right? These are concepts that are not just about whether a person falls below a certain level of income. It’s more complex than that.
And it, in some ways also, I think, calls the question—and I feel like this is probably an important part of laying the foundation for this conversation as well—but there’s been a long-in-the-works shift that we’ve really seen in the U.S., and also to some extent, globally and in the developed world, but especially in the U.S., we’ll focus this conversation here, away from viewing and understanding disability and people with disabilities with what’s often referred to as a medical model, and towards starting to understand disability and the lived experience of disability in this country with a social model. And I realize that that’s probably an important part of setting the table for the rest of this conversation as well. Vilissa, I don’t know if you wanna take a stab at explaining a little bit the significance of that shift and what it means to understand disability with a social model, or Kim, if you wanna jump in on that as well.
THOMPSON: I think for me, understanding disability from a social model just really, to me, gets everybody on board where we have already been as disabled people. We know that we deserve to be fully involved in society. We know that we, you know, our disabilities are a part of who we are, and we are also more than that. And we have other identities that intersect with our disability ones. They really have a impact on the opportunities and supports that we’re able to retain and build. So, I really think that some of this work is getting people to see disabled people sometimes for the first time.
I know I really find that in my own work in having conversation with folks, challenging them in their understanding of the medical model of disability versus the social model. And really tackling the underlying ableism that they have about disabled people within their work, whether they do non-profit sector or they’re in education or doing movement work, just really getting people to analyze, what does it mean to be disabled? Are you paying attention to what disabled people are really going through within your work?
And also, if you are disabled yourself, which I find in many of these settings, how are you able to be fully seen within this setting that you’re in? And most of the time, some of them may not have ever been seen or even thought about how can they advocate for themselves within the structures that they’re a part of. So, I think for me, looking at disability, bringing forth disability in the social model has been critical for people to analyze how they view disability on a personal level and then more broadly, on the macro scale.
VALLAS: And Kim, I don’t know if you wanna add to that. Yeah, go ahead.
KNACKSTEDT: Yeah. I really like how Vilissa explained that about really being seen. I think that’s so critical when thinking about the social model. I think one of the things when doing, especially in recent years with some of the work and really at the White House setting kind of a foundation on disability policy, it was a lot of kind of explaining what is disability policy? And I think that’s important with thinking about the social model is how having that entry point to these conversations.
And I think [chuckles] we often use the example of curb cuts and how for so many, being disabled is actually—and the accommodations and the accessibility changes made for all of us—actually really benefits everyone. And when we think about disability in a social model, it actually just improves life for everybody. And I think that entry point can be huge when we think about from a policy lens. Because policy made for people with disabilities at the forefront actually improves the policy for every single community. And so, when taking that lens on it, and essentially a curb cut lens on policy, it really can make lasting change for every single community.
VALLAS: So, to put a sort of an even finer point on it—and I appreciate so much of how each of you has described the medical model versus the social model that we’ve really moved to and that the community, really, has helped educate people in understanding the need to move to—it’s about moving beyond seeing people as just a diagnosis or a disability type or a condition or whatever that medicalized language is that reduces humans to a specific diagnostic label! And it’s understanding that the human experience is one that it does not exist in a silo but is shaped by the community that one is in, the society that one is in, and whether this society is biased against and not open for business to and not welcoming and inclusive of disabled people, or whether it’s one that is built literally and metaphorically for full participation of people with disabilities. And that’s just one that the curb cuts metaphor, I think, is a really great way of understanding and thinking about some of this because it’s so readily relatable. Everyone knows what a curb cut looks like, but obviously, that’s just one example of something that is a multilayered, multivalent phenomenon throughout a society that still is not, even three decades after the ADA, actually built for people with disabilities.
So, with that as some of the table setting that feels really important to get out of the way before we can get into some of the other topics I know we wanna tackle today, the next place I really wanna go with both of you is, why is it so important to apply a disability lens across policymaking? And Kim, you started to get a little bit into that just now. Of course, our focus as a team is especially economic policymaking with a disability lens, as is probably clear from “disability economic justice.” But I wanna start by asking the question of what gets missed when disabled people who—despite making up one in four Americans, right, somehow have been as marginalized as the disability community has for so long—what gets missed when disabled people are an afterthought versus actually centered in our understanding of people who need to be contemplated as we make economic policy?
And I ask that question thinking back to not that long ago, actually, not much, it was about a decade ago, just about a decade ago, that we didn’t even have data from the federal government that told us what poverty looked like among disabled people in the U.S. because the census didn’t even break the data out that way. So, I ask this question with this direction that we’re heading in now still being very, very new in a lot of regards. So, Kim, I don’t know if you wanna pick up there and speak a little bit to what gets missed when disabled people are an afterthought in our policymaking, and especially our economic policymaking.
KNACKSTEDT: Yeah. I think that’s a really, really important question, and it’s something that I think is often still a problem. I think disabled Americans are still an afterthought in policymaking! Which is why we’re having this conversation, right, [laughs] and launching this work. And I think part of it is that it’s so important because we, especially with this economic work, I think oftentimes—and this is somewhat answering the question [laughs]—but I think that oftentimes the disability community as a whole is still seen as a community to go to ask questions of and tell about policies versus actually thinking about as part of the policies. And I make that distinction for a really important reason, because I think that when the policy is already baked and made and then the community is told about it afterwards, it’s too late to then really think about how is the policy going to then impact people with disabilities.
When we actually write the policy with people with disabilities in mind from the beginning, then we can think about things like COVID, for instance, how will changes actually impact people who are immunocompromised? How will unemployment policy actually get disabled workers into a job? So, we can make real changes in the policies from the get-go versus having to fill in the gaps afterwards. So, I think there’s an important distinction. And I think it’s important to take that lens because when we’re an afterthought, then it’s very much having to fix things afterwards, kind of tinker around the edges, and we really end up playing kind of a retroactive game of catch up constantly. And then we’re behind decades, like we are oftentimes now. So, I’m sure Vilissa has more to add to that.
VALLAS: And Vilissa, as I take the same question over to you, I’m gonna add an additional layer, which also gets into, as you said when you were introducing yourself a few minutes ago, a big part of the work that you have been a real leader on in the community and that you’re also helping to really lead and build out here at TCF as well. And that’s that, as you mentioned in your introduction, there is more to the human experience of being disabled in the United States of America in 2022 than necessarily just being a person with a disability. There are other things that come into play, other aspects of a person’s identity, whether that be race, whether that be gender, whether that be LGBTQ status and so forth. And so, you’ve really been a leader over the years in pushing the disability community to center and to acknowledge and to talk about and to understand intersectionality and the reality of living at, say, the intersection of ableism and racism, which conspire to compound each other and don’t exist or happen to people in silos.
You actually were the creator of a hashtag that went viral several years ago called Disability Too White that really forced a lot of this conversation and broke open, frankly, a lot of conversation that needed to be happening, but was not happening within a very white-led disability community at the time. So, as you weigh in and pick up the ball from where Kim was just starting to head about the importance of applying a disability lens across our policymaking—rather than, hey! Checking in with folks after we’ve already got everything baked to see how this looks to the disability community, 61 million Americans, one in four Americans just to note that again—I’d love to give you the opportunity to layer on why it’s also so critical to center intersectionality in this work, and especially as part of our policymaking. So, Vilissa, I’m gonna bring you back in here on that.
THOMPSON: Yes. When I began this work, one of my frustrations has been looking at the data and not finding that intersectional understanding. We just give like a broad number for disabled people. And you might get something on gender when it comes to men and women, but the breakdown of race is something that I particularly care about because I know that if there’s a number for across the board for disabled people, if that’s broken down further, the likelihood that the issue could be more grim for those of us of color is pretty spot on. And I think that’s so important to have those numbers that Kim was mentioning because we have a bigger view as to who is the most impacted when it comes to whether it’s employment. I’ve been tracking those particular numbers for the past couple years and know that disabled people of color, particularly Black disabled folks, our employment numbers are sadly lower than our white peers and other racial groups that is also being tracked.
When it comes to education, the cost of housing, there’s so many factors that come into what opportunities disabled people are able to acquire or retain and how their disability plus who they are when it comes to their racial identity, their gender, their orientation, all those things matter. And one of my things I always talk about is that you cannot fragment disabled people. You must look at the whole picture. In social work we call it the holistic approach or holistic perspective. You must see the whole person for who they are to better understand the why: why certain people may be able to get things more easier than others. And it is not because of a lack of effort. It’s of a lack of opportunity, a lack of ability to acquire that without certain barriers, whether it’s prejudice, whether it’s biases, or if it’s systemic barriers to where folks have been systemically disadvantaged because of who they are. All those things matter.
And one of the frustrations that kind of came about when you mentioned Disability Too White is our community’s failure for decades to really analyze what happens to us as a community outside of just disability. We have this saddened mindset of if you talk about anything other than disability, then you are bringing attention to something that’s quote-unquote “not important.” Well, it is very important. It is very important for those of us who understand that disability alone is not the barrier to us getting the things that we have a right to, that we have a desire to. And some of that mindset is due to the over-whiteness of leadership, as to who says what is important. And I think that’s one of the great things about being at this time in this activism is that we are no longer allowing that type of mindset to rule. We are no longer allowing particularly the old guard of the community to tell us what matters. We are pushing them out the way sometimes to really get the full story heard.
And the full story is that we are a multiracial, very big group, and those voices matter just as much, so we can get a fuller picture when we have these numbers. Who is, as I said earlier, the heaviest impact and why, and what can we do to ensure that when we have policies in place, those at the margins truly get the support that they need? It’s always first or ensuring that we are developing policies that involves everybody in its totality and not just those who have certain privileges. So, I think that the intersectionality aspect of this really pushes us forward to be a more inclusive group that really should have been the tone decades ago when this movement started. But as the phrase goes, better late than never.
VALLAS: [laughs] And there are—I love you—and there are real social, societal, cultural implications to all of what you’re describing. But there are also really granular policy implications. One example we were all just talking about the other day—‘cause we’re all working on a report, which is one of the things you do at think tanks, data collection—I mentioned before, it’s not that long ago the census didn’t even have data collection that could tell us what the rate of poverty among disabled people in this country was versus people without disabilities that it does now. And we now know that the rate that disabled people experience poverty at is about twice as high as non-disabled people, right? So, really important for highlighting those kinds of economic gaps and disparities that then inform policy.
But today there is, you know, even though we’ve gotten incrementally better, now we can start to do some of that kind of disaggregation that’s so important for us understanding inequities. But we still have a really far way to go, even with just the data the federal government collects, particularly when it comes to those kinds of breakdowns that help us tell the story about life at the intersection of, say, ableism and racism. Our ability to break numbers out by, say, what is the experience for white disabled people versus, say, Black disabled people or, say, Black disabled women and so forth is still really limited in a lot of cases. And that’s a very granular, maybe even banal, boring sounding consequence of some of what you’ve been describing that further hamstrings the ability of the policy sector to respond appropriately. And Kim, I wanna let you have a chance to get in on that as well ‘cause I know we were just having this conversation about data and how it connects to the rest of the picture.
KNACKSTEDT: [chuckles] Yes, you could’ve seen me on the edge of my seat here. Well, I think that the points that Vilissa brought up are so critical. But I think it’s also, just to build on what you both were saying, with the data, one of the things that I think is such a disadvantage for our data collection is how even the mere definition of disability differs from every single program that collects data across the federal government. And so, we’re here at a think tank. If you think about from a research perspective, if you wanted to just find out how many individuals who receive SSI are receiving vocational rehabilitation, that is a really, really challenging piece of information to collect because the definitions alone don’t match up. And so, just trying to gather that information can be extraordinarily challenging in trying to cross data sets, let alone trying to now disaggregate that data by race and gender and all of the kind of identities we’re actually talking about.
So, I think we actually do have a really big challenge on our hands ahead of us to help kind of understand the complexities of economic security because we don’t even actually have a full understanding of what’s happening right this moment. And so, I think even the numbers that we do know are probably a pretty big underrepresentation of really what is here and what’s happening right now since we’re not really capturing everyone out there.
VALLAS: And that’s definitely some of what will be coming out of this team now that it exists, now that you both are on board.
KNACKSTEDT: [laughs]
VALLAS: So, for folks who are hearing this and going, “Man, I wish I had more research! I wish I had more data, more statistics on the picture for people with disabilities economically in this country,” well, don’t wait too much longer, folks! We’ve got something coming your way that you’re gonna like in the next several weeks. But coming back to the kind of big picture here and some of why The Century Foundation is launching this team right now, some of why the three of us all think that having a serious national conversation about disability economic justice—or put the opposite way, the economic crisis facing the disability community today—is so important right now, of course, takes us to the COVID-19 pandemic.
I wanna be very clear, the economic crisis facing the disability community long predates the COVID-19 pandemic, but this pandemic moment has certainly been illustrative in many, many ways, both in shining a light on pre-existing barriers to economic security that so many people in the disability community have been facing, even three decades after the Americans with Disabilities Act, or ADA, was signed into law. But the pandemic has also, without question, dramatically exacerbated a lot of those barriers as well. I wanna give each of you an opportunity to talk a little bit about this pandemic moment and its significance. Ideally, one would hope this has also been a learning opportunity, that the pandemic has also helped us as a nation, us as a society, learn some important lessons that maybe should not have been lessons, maybe were things we should have known before this pandemic moment, especially when it comes to how disabled people are faring and how our policies treat disabled people, and whether they’re adequate for disabled people to maintain dignity, maintain economic security. But I wanna give each of you a chance to speak a little bit about this pandemic moment and what it has highlighted, exacerbated, caused us to learn in the way of lessons. And Vilissa, I’m gonna head to you first with that.
THOMPSON: I think that I’ve seen a shift, at least in the conversations. For me, at the beginning of the pandemic, I think a lot of people frustrations were about the adjustments that people had to make in how they thought about work and school. Many of us, myself included, understood that working, going to school could be done virtually and is still of value as in-person. And we saw the shift in that. And I know that for some folks in the community who gave commentary at the beginning, it left a bitter taste in some of our mouths because of the opportunities that we have been denied when we asked for this reasonable accommodation and request to work or do school at home and other activities, that those with the power thought less of and didn’t wanna do. So, it was just very interesting to see that we were forced to do something that was always available, particularly as technology has advanced and people realizing wow, this is a great thing to do. And disabled are people like, “Yeah! Very glad that you are now up to speed on the different ways that we can engage with each other.”
And I think two years later, and now, as we are in this thing, just realizing that the lack of wanting to be progressive in how we engage with each other. We see the rush to in-person everything at this point. And also, just the lack of care in the fact that many of us cannot go back to normal because it’s still not safe to. And the lack of feels like empathy and concern for those of us who still need to be protected and considered when it comes to wearing a mask and things of that nature. And we see that in not only the societal attitudes, but also in the governmental attitudes as well.
And I think that for me in watching some people in the community, I just have a disheartening of wondering what would happen to us, for those of us who’ve done the right thing so long, and now we’re watching other people not have the same level of consideration. I think that’s been the most upsetting thing for me, is to see some of my friends who have been so careful in the past two years still having to do so and watching everybody else kind of live their life, and disabled people yet again feeling left behind as we have sadly understood for us to be in this society continuously left behind, even in an event that is so global and also has been disabling in many ways, just really seeing society not caring about disabled people yet again. I think that kind of has been exacerbated for me, just the carelessness and the lack of empathy and concern for your neighbor that we like to say, but our actions do not always convey that.
VALLAS: And many folks in sharing that observation in recent months, particularly as a lot of folks have decided this pandemic is “over,” right—I put that in large scare quotes, “over”—as you describe, have really been pointing out that this is one of those moments that is very eye-opening in demonstrating whether disabled people feel like we are part of the “Us” or whether we are part of a “Them” that folks who talk about us, right, capital “Us,” are really meaning to include in that understanding of who’s on which side of that line.
Kim, I wanna send the same question over to you, but adding the extra and obviously very important layer that the COVID-19 pandemic has been a mass disabling event.
KNACKSTEDT: Mmhmm.
VALLAS: It has spurred the largest influx of new entrants to the American disability community in modern history, possibly globally as well, but we’re focusing here on the U.S. for this conversation. So, as we talk a little bit about pandemic lessons, pandemic impacts, and this pandemic moment in general, I ask this question also hoping that you might speak a little bit to the significance of disability policy, and disability economic justice policy in particular, amidst a mass disabling event.
KNACKSTEDT: Well, you read my mind, and you’re right where I was gonna go [laughs] with my answer, as usual, when we talk. I think this has been, well, you know, there’s incredible challenges with what’s happened over the last couple years. And I do wanna take one step back from that, that we entered the pandemic with the disability community, with all of us, having fought for years with the previous administration and really having entered the pandemic fighting for basic, fundamental rights and trying to maintain fundamental rights, then fought for a year during the pandemic, fighting in those COVID bills that came out trying to maintain fundamental rights as they were trying to be stripped away in those bills. So, I think that actually setting that context is really important because now we’re in a new period of the pandemic where, yes, we’re in a very different state where people have decided it’s over, and we’re not actively fighting legislation in the sense of the ADA trying to be ripped out from under us.
But we do now have a whole new group of folks that have actually, have joined the community through having long COVID, which of course, is what most people call it. You can call it post-COVID symptoms, a lot of different names. But I think it’s really important to kind of take this lens on it because we really don’t even have an idea of how many people have joined our community. And when you think about like the economic impacts of that to the entire country, we have so many folks that really don’t even know that they have rights yet or know how to ask for an accommodation, all the way from early childhood through the workplace that are gonna need accommodations, that may be trying to get accommodations, that are really trying to navigate this whole new system. Of course, if you follow social media, you see our community welcoming folks with open arms.
But this is an interesting time for the country because, again, probably one of the largest mass disabling events we may be experiencing potentially ever. And I think it’s a little bit of a reckoning moment to say, like, are we going to actually embrace kind of a new era of actually really thinking about what accommodations in the workplace and in education look like? Because that is going to be actually driving economic security for the entire country moving forward because we have folks that aren’t gonna be able to work a normal workday moving forward. And that’s gonna be a lot of people, and we don’t know for how long or forever. And we really don’t know enough about long COVID yet to actually, really understand what that looks like. And so, there’s a lot to unpack here, but I think it means that as a country, we have to think about this moment very, very carefully and intentionally and also really embrace all of our new members to the disability community in a meaningful way. So, there’s a lot to unpack. It probably could be a whole episode. [laughs]
VALLAS: It indeed could. And I was just about to say for folks who wanna go a little bit deeper on all of that, we did have an episode recently, a few months ago, featuring some of our friends from the disability community talking about the road ahead for folks with long COVID. So, you can find that episode in our episode archive. And I’ll also suggest that folks go back and take a listen to an episode that I recorded with the great Rebecca Cokley, dear friend, sister, friend of all of ours, colleague of all of ours, who is now over at the Ford Foundation running their brand-new U.S. disability rights portfolio. We talked at the end of 2021 about some of these themes as well, so I’ll send folks to both of those episodes for a little bit of a deeper dive on some of where you started to go, Kim.
But in the last few minutes that we have—and this has flown by so quickly! I knew it would. I feel like we easily could’ve filled three or four hours, the three of us on all the things we wanted to get to—but in the last few minutes that we have, I’d love to end on the note of some of what’s to come, which I’m really excited about and also, which really gets into a lot of themes that we’ve been talking about today, but also talking about in the past several weeks on Off-Kilter, as we’ve been doing a series of conversations about what it would look like to turn policymaking on its head, what it does look like to turn policymaking on its head, and instead of business as usual at think tanks, centering directly impacted people and communities in policymaking. And so, that’s part of actually why I thought this episode would be a nice continuation in some ways of those themes.
And in the last few minutes that we have, where I’d love to go in terms of some of what we preview of what’s to come from the Disability Economic Justice Team at The Century Foundation is some of the changes that we’re working to bring to how policy gets made in the disability policy, disability economic justice policy, space so that we can bring about the change we know we need to see in the world, a.k.a. the unfinished business of the ADA, which we all agree we can no longer afford to talk about only once a year in July when we celebrate the anniversary and talk about how far we still have to go. So, in the last several minutes that we have, I’d love to give the two of you the opportunity to preview a little bit some of the infrastructure that we’re working to build so that we know we can move from nice sounding ideas and campaign platitudes, which we’re glad have started and need to continue to transformational change and to economic justice for people with disabilities. So, Vilissa, I don’t know if you wanna kick off there in talking a little bit about the Disability Economic Justice Collaborative that we’re all building together, and then, Kim, we can tag team a little bit.
KNACKSTEDT: Perfect.
THOMPSON: Yes. I think that’s what I am most excited about is listening to the people, bringing the people who understand these issues, both intimately and also, within their professional scope is so important. And that is definitely what the Disability Economic Justice Collaborative is all about. We have almost two dozen groups and individuals that we will be working with who come from different aspects of the community, different industries. Some are activists within our own work. And I’m just really excited. This is a very intentionally intersectional and inclusive group. And I see it personally as being an example as to what other think tanks and other entities can do when you bring the people closest to the issue or people who know these issues. It’s always at the back of their hand because of who they are, what they’ve experienced, and what they know in their body of work. So, I really see this as us leading the charge, us setting the example as to how you do this work correctly, intentionally, and fully. And not just as a to-do list item to check off, it’s really making it fundamental in the foundation of what you’re trying to build.
So, I think for me, because the collaboration is what I am so excited about to be able to do here, just really bringing forward that work, being able to work alongside with some of my friends, and just really do good work together, as I said, make good trouble. So, I think that’s what I’m most excited about in this work, is to bring members of the community that we know, that we support, and really work alongside with them as what we’re trying to build here at TCF.
VALLAS: And a big part of the model that I’m just so incredibly excited about is bringing those folks together with some of the most powerful think tanks in Washington who are multi-issue organizations. They do critical work that informs policymaking inside government, and yet, until fairly recently, we haven’t had a single think tank. CAP became the first one. Now TCF has become the second. We didn’t even have any think tanks that had dedicated disability projects, let alone a disability lens across their work. So, that is part of the hope here as well, is that building on what Rebecca Cokley and I got started at the Center for American Progress, with you, Vilissa, in the Disability Justice Initiative, that in many ways, this is about bringing that disability lens across the entire think tank sector to change how policy gets made from the inside, and I wanna be very clear, with a lot of excitement and enthusiasm from these think tanks. It’s not like we’re bringing folks kicking and screaming. They want to be doing this work and wanna do it in partnership with the community.
Kim, you also spoke before about the significance of some of what has been happening inside of government, and you, in full disclosure, have been a big part of leading that change inside government, both within the Biden administration, since Biden’s loss is our gain in grabbing you for this team—
KNACKSTEDT: [laughs]
VALLAS: —but also on Capitol Hill, where you played a number of really important roles in both the House and the Senate in bringing disability as a lens across the way that congressional offices and now the White House and federal agencies think about disability relating to other policy work. So, you’re gonna get the last word in sort of connecting the dots to some of the change that we’re working to bring, not just within the policymaking sector outside of government, but inside government as well.
KNACKSTEDT: Yes. So, I think there’s kind of parallel processes happening, which is really important to actually make meaningful change. So, we do have, on The Hill, there’s staff that come together and talk about disability policy, and you have members from new members to members that have been there for a long time leading major committees who care about disability policy and are working together to advance an agenda. And then we have agencies, interagency processes to really advance disability policy. So, from a federal government perspective, disability is being applied across domestic policies. And so, that’s kind of our focus here, and again, as that lens we talked about. And sure, there are things I think we all wanna improve. There are areas we wanna see more of, and at another time, we can get into all of that. But it’s meaningful, it’s different, and it’s a huge step from where we’ve been in years past.
And then what we’re hoping to do with the collaborative is working with these amazing think tanks and all of the different folks that we have coming in to kind of our virtual table really set an agenda to move forward and advance economic security, and how can we actually achieve that in the future? And so, how can we build on relationships? How can we center voices and experiences of disabled people? How can we be resources and host events and actually produce the materials to really think about advancing economic security? And so, working together then, actually starting to develop policies across kind of the pillars we talked about before that actually move this forward in a meaningful way.
VALLAS: And there’s so much more that is still to come and under development as well that I know we’re all incredibly excited about. But I just wanna close by saying how thrilled I am to have both of you as part of this team, both of you at The Century Foundation, and to be in this work with both of you. We’ve only scratched the surface in this hour, and I know that, I already know we’re gonna have to have future episodes where both of you come back and talk about what’s going on and what this collaborative is up to and what the team is up to. But just a huge thanks to both of you for taking the time, but also just for your extraordinary leadership in this space. And I’m really honored to count both of you not just colleagues, but friends. This was a really, really, really fun conversation for me.
KNACKSTEDT: Thank you for having us.
THOMPSON: Definitely. Thank you. This has been fun.
KNACKSTEDT: Mmhmm.
VALLAS: And you can find lots more about where to follow Vilissa and Kim, of course, in show notes and at our syllabus page, TCF.org/Off-Kilter. Follow them on Twitter @VilissaThompson, @KIKNACK for Kim. And you can find links to pieces that they are writing and things they’ve been doing and lots more in show notes. Take good care, guys. Looking forward to having you both back on the show soon. Sending lots of love. [theme music returns]
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 indefatigable Abby Grimshaw. 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 or wherever you get your pods. And for the superfans, you can find a full archive of all past episodes and show transcripts over at TCF.org/Off-Kilter.
Got an idea for a topic you’d like to hear us unpack or a guest you’ve been wanting to hear on the show? Send us a note at [email protected]. Or if social media is more your bag, give us a holler on Twitter @Off-KilterShow. 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. It really does help. Thanks again for listening and see you next week.
Tags: Off Kilter
Off-Kilter Podcast: Meet TCF’s New Disability Economic Justice Team
This week, Rebecca took a break from Off-Kilter’s regularly scheduled programming for a sit-down with the newest members of The Century Foundation’s brand-new Disability Economic Justice Team, which officially launched last month. Kim Knackstedt comes to TCF from the Biden administration, in which she served as the first-ever director of disability policy on the White House Domestic Policy Council, after many years as a staffer on Capitol Hill and before that, as a special ed teacher. Vilissa Thompson is the founder of Ramp Your Voice!, a former licensed social worker, and a long-time thought leader in the disability community at the intersection of race, gender, and disability.
For more on TCF’s new Disability Economic Justice Team:
[bright theme music]
REBECCA VALLAS (HOST): Welcome to Off-Kilter, the show about poverty, inequality, and everything they intersect with, powered by The Century Foundation. I’m Rebecca Vallas. And this week we’re taking a break from Off-Kilter’s regularly scheduled programing for an extra special episode with two incredibly brilliant advocates and changemakers whom I’m incredibly excited to have on the pod, Kim Knackstedt and Vilissa Thompson. You’ll hear from them momentarily. They’re the newest members of The Century Foundation’s brand-new Disability Economic Justice Team, which I am thrilled to announce officially launched last month! And I’m honored to get to work alongside them as we build out this work at TCF.
So, without further ado, Kim, Vilissa, thanks so much for coming on the podcast. And I know we’re gonna give you each a chance to introduce yourselves, but I’m just really excited you’re here! So, welcome!
KIM KNACKSTEDT: So thrilled to be here!
VILISSA THOMPSON: Definitely. Thank you for having us!
VALLAS: You know, we really should’ve done this at an hour when it would’ve been appropriate to also have drinks while we record.
THOMPSON: [laughs]
VALLAS: I regret deeply the scheduling of this podcast today, but we’ll just have to—
KNACKSTEDT: I agree.
VALLAS: —[laughs] we’ll have to suffer through. So, let’s get right into it ‘cause there’s a lot that I know we wanna talk about, and I’m just really excited and appreciative to both of you for taking the time. So, the place I generally like to start these conversations is to ask how each of you comes to this work, your pre-TCF life, in this case. And Vilissa, I’m gonna start with you. Talk a little bit about how you come to this work.
THOMPSON: Yes. Well, my background is in social work. So, I’m a macro social worker, which means I look at the way communities and systems interact with each other and kind of where the gaps are within that. I have a lot of micro social work experience when it comes to working with people, families, and groups. So, with me, it’s a unique combination of where I understand those gaps from the personal level as to how systems and organizations and communities impact each other, and then what are the gaps within those bigger entities? And how can we support people who are the decisionmakers in our society so that those of us in these communities can thrive and not be heavily impacted? So, that’s just a little background as to how I got here.
This work is something that I did not have in mind [laughs] when I went to grad school. I wanted to be a therapist, and that changed with a lot of things. But I really love what I do in developing a body of work that combines social work with disability activism with intersectionality and just really being able to do a host of different things that really matter to me at this time.
So, I am just really thrilled to be at TCF to bringing all those scopes and those identities and that body of work with me that allows me to continue to do the things that I love, you know, really fight for the rights for disabled people, including myself, as well as ensuring that disabled people know what those rights are, how to empower themselves, how to just really not feel so powerless when we think about how these systems can really make us feel less than. So, for me, it’s just about ensuring that people have the tools that they need in full, and just to be a part of that effort.
VALLAS: Well, and I could not be more excited to have you now, or a part of you at least, at The Century Foundation helping to build out this work. I’ve had the good fortune of getting to work with you in some of the other hats that you’ve worn it at different points, including the Disability Justice Initiative at the Center for American Progress. So, you’re no stranger to the think tank world, but you’ve worn lots of hats. I know we’ll get into several of those and how they inform your perspectives on policy and so much more.
But Kim, I wanna bring you in next. Same question to you. I’d love to give you the chance to talk a little bit about how you come to this work. It’s a little bit of a different road than Vilissa’s.
KNACKSTEDT: Yeah, absolutely. And I’m thrilled to be working with Vilissa and you as well, Rebecca. And yeah, it’s funny. Somebody made the joke recently that I beat the land speed record through federal government work recently. So, most recently, I came from the White House as the first director in disability policy on the Domestic Policy Council. So, I was there for 14 months, started at the beginning of the administration, and then just joined TCF about now three weeks ago. And really, an incredible experience at the White House and getting to set the foundation for disability policy really from the White House’s perspective and across the administration, standing up interagency policy committees and working with all the different agencies on the work that they were doing and kind of that agenda setting from there. Which I know we’ll get into as the future of our work as well.
And then, really, before that, had some great years on The Hill. So, right before going to the White House, I was with Senator Patty Murray’s team on the HELP Committee and for a little over a year and really helping to think about disability policy from the HELP Committee perspective really across the Senate. And prior to that, with Chairman Bobby Scott on Ed and Labor. And so, working with two powerhouse members on the Hill and getting to really help think about for Democrats what disability policy looked like.
I came into the work of the federal government right before that from my Ph.D. at University of Kansas and really coming with a systems-change kind of perspective and thinking about what is disability policy, and how can we make a difference from my work as a Special Education teacher. And what could we, what is this lever of federal policy, and what can we really do to try to make some big changes? And so, now getting to kind of apply that across all of domestic policy through all of these years has been an incredible opportunity. And then being able to think about us, as a person of chronic illness, how to actually apply my own lens to that and think about the rights I’m fighting for personally as well has been a really great opportunity.
VALLAS: And I could not be more excited to have you at TCF as well and helping to build out this work here, too. In a lot of ways, I sort of feel like the three of us as this team are kind of the beginning of a joke! We were saying this in a meeting earlier this week.
KNACKSTEDT: Yes.
THOMPSON: [laughs]
VALLAS: Where you’ve got the, you add me into it, and you’ve got the chronically ill lawyer and the disabled social worker and the chronically ill Special Ed teacher walk into a bar, right?!
KNACKSTEDT: [laughs]
VALLAS: And it’s like, well, meet TCF’s Disability Economic Justice Team! No, I say that in jest, but I say it to some extent with a little bit of a kernel of real kind of seriousness there, because I’m really excited about the incredible set of perspectives that this team brings together, both through lived experience of disability and chronic illness, but also so many different interactions and connections to and perspectives on and experiences with the many systems that are so important for people with disabilities, many of which are incredibly problematic and need a lot of change. And so, just so much just knowledge and experience between what each of you brings. I’m just very, very excited this team exists!
KNACKSTEDT: [laughs]
VALLAS: But I will set my excitement aside so we can continue with this conversation for the podcast. And I feel like a place to go before we get too far along with this conversation is we need to ask the question, what is disability economic justice, and lay a little bit of that foundation. So, I’m gonna turn that question to each of you. It’s in the name of the team, but it has some pretty specific resonance with certain components of a policy agenda that, until pretty recently, nobody realized needed to have disability as a lens across it. That has changed to some extent in recent years as we’ve heard the likes of, say, Ayanna Pressley or Elizabeth Warren say in almost every opportunity that they have, “Every issue is a disability issue.” But that’s something of a new development for that level of awareness to really enter the policymaking sector. So, before we get too far with this conversation, Kim, I’m gonna turn it to you first to take a stab at defining disability economic justice, which will be a nice entry point into talking a little bit about what this team is focused on.
KNACKSTEDT: Absolutely, yes. And I think we’ve talked about we need an infographic to really show this, and that’s kind of how my mind works, is in a visual form. But I’ll try to use my words as best I can here. I think disability economic justice is really everything that helps an individual really try to kind of achieve a happy, successful life. And so, I think we’re thinking about it in terms of housing, employment, transportation, food, health care, technology, education, community living, access to benefits, financial security, and savings. I think the list can go on and on, but it’s really the entire life span that kind of feeds into economic justice and really, an agenda that looks forward and says, how can we think about all of these different pieces together to help to achieve a life that is lived in the community successfully and fulfilling? And how can we do that through administrative action, through policy, through legislation, and through data collection? What are all the different pieces that are needed across these different pillars to achieve economic security? And that’s just a start at trying to define it. But I think it’s a tangible concept that I think we were trying to kind of lay out in a really thoughtful way. So, I don’t know if Vilissa has more to add there. Yeah. [laughs]
VALLAS: It’s a great start. And that’s exactly where I was gonna go. Vilissa, how do you wanna build on that? ‘Cause it’s a good set of building blocks that I feel like, Kim, you’ve started to lay out there.
THOMPSON: Yes, definitely. I think for me, thinking about it demonstrates that disabled people have economic power, which is something that we don’t really consider our community to have. Because we are and have been overlooked by the structures that make the decisions as to who gets what and how, from our federal government when it comes to benefit supports to local governments as to the type of programs they support, whether it’s transportation, employment, if we are even considered or not. And I think that realizing that we do have economic power is so important because we are the largest minority group in this country, which means that we should have a significant power bloc in that.
But there are so many barriers that are in place that strips us of that power, some of which Kim mentioned when it comes to employment, education opportunities, transportation, housing, things that in some ways are fundamental rights for us to be able to access, but due to discrimination, due to biases both in the community as well as systemic, they can really hinder our ability to thrive and not just barely make ends meet. So, I think that is something for me to let disabled people know who have felt left out of the conversations that we are a part of this, and we should demand more and expect more when it comes to how we are able to support ourselves and be fully a part of our communities and the society, that we have a right to be there.
VALLAS: It’s a really, really, really good way, I think, of putting it, right? Because in so many ways, economic justice is not just about dollars and cents, right? It intersects with the place that one occupies in society. It intersects with and is the opposite of marginalization, right? These are concepts that are not just about whether a person falls below a certain level of income. It’s more complex than that.
And it, in some ways also, I think, calls the question—and I feel like this is probably an important part of laying the foundation for this conversation as well—but there’s been a long-in-the-works shift that we’ve really seen in the U.S., and also to some extent, globally and in the developed world, but especially in the U.S., we’ll focus this conversation here, away from viewing and understanding disability and people with disabilities with what’s often referred to as a medical model, and towards starting to understand disability and the lived experience of disability in this country with a social model. And I realize that that’s probably an important part of setting the table for the rest of this conversation as well. Vilissa, I don’t know if you wanna take a stab at explaining a little bit the significance of that shift and what it means to understand disability with a social model, or Kim, if you wanna jump in on that as well.
THOMPSON: I think for me, understanding disability from a social model just really, to me, gets everybody on board where we have already been as disabled people. We know that we deserve to be fully involved in society. We know that we, you know, our disabilities are a part of who we are, and we are also more than that. And we have other identities that intersect with our disability ones. They really have a impact on the opportunities and supports that we’re able to retain and build. So, I really think that some of this work is getting people to see disabled people sometimes for the first time.
I know I really find that in my own work in having conversation with folks, challenging them in their understanding of the medical model of disability versus the social model. And really tackling the underlying ableism that they have about disabled people within their work, whether they do non-profit sector or they’re in education or doing movement work, just really getting people to analyze, what does it mean to be disabled? Are you paying attention to what disabled people are really going through within your work?
And also, if you are disabled yourself, which I find in many of these settings, how are you able to be fully seen within this setting that you’re in? And most of the time, some of them may not have ever been seen or even thought about how can they advocate for themselves within the structures that they’re a part of. So, I think for me, looking at disability, bringing forth disability in the social model has been critical for people to analyze how they view disability on a personal level and then more broadly, on the macro scale.
VALLAS: And Kim, I don’t know if you wanna add to that. Yeah, go ahead.
KNACKSTEDT: Yeah. I really like how Vilissa explained that about really being seen. I think that’s so critical when thinking about the social model. I think one of the things when doing, especially in recent years with some of the work and really at the White House setting kind of a foundation on disability policy, it was a lot of kind of explaining what is disability policy? And I think that’s important with thinking about the social model is how having that entry point to these conversations.
And I think [chuckles] we often use the example of curb cuts and how for so many, being disabled is actually—and the accommodations and the accessibility changes made for all of us—actually really benefits everyone. And when we think about disability in a social model, it actually just improves life for everybody. And I think that entry point can be huge when we think about from a policy lens. Because policy made for people with disabilities at the forefront actually improves the policy for every single community. And so, when taking that lens on it, and essentially a curb cut lens on policy, it really can make lasting change for every single community.
VALLAS: So, to put a sort of an even finer point on it—and I appreciate so much of how each of you has described the medical model versus the social model that we’ve really moved to and that the community, really, has helped educate people in understanding the need to move to—it’s about moving beyond seeing people as just a diagnosis or a disability type or a condition or whatever that medicalized language is that reduces humans to a specific diagnostic label! And it’s understanding that the human experience is one that it does not exist in a silo but is shaped by the community that one is in, the society that one is in, and whether this society is biased against and not open for business to and not welcoming and inclusive of disabled people, or whether it’s one that is built literally and metaphorically for full participation of people with disabilities. And that’s just one that the curb cuts metaphor, I think, is a really great way of understanding and thinking about some of this because it’s so readily relatable. Everyone knows what a curb cut looks like, but obviously, that’s just one example of something that is a multilayered, multivalent phenomenon throughout a society that still is not, even three decades after the ADA, actually built for people with disabilities.
So, with that as some of the table setting that feels really important to get out of the way before we can get into some of the other topics I know we wanna tackle today, the next place I really wanna go with both of you is, why is it so important to apply a disability lens across policymaking? And Kim, you started to get a little bit into that just now. Of course, our focus as a team is especially economic policymaking with a disability lens, as is probably clear from “disability economic justice.” But I wanna start by asking the question of what gets missed when disabled people who—despite making up one in four Americans, right, somehow have been as marginalized as the disability community has for so long—what gets missed when disabled people are an afterthought versus actually centered in our understanding of people who need to be contemplated as we make economic policy?
And I ask that question thinking back to not that long ago, actually, not much, it was about a decade ago, just about a decade ago, that we didn’t even have data from the federal government that told us what poverty looked like among disabled people in the U.S. because the census didn’t even break the data out that way. So, I ask this question with this direction that we’re heading in now still being very, very new in a lot of regards. So, Kim, I don’t know if you wanna pick up there and speak a little bit to what gets missed when disabled people are an afterthought in our policymaking, and especially our economic policymaking.
KNACKSTEDT: Yeah. I think that’s a really, really important question, and it’s something that I think is often still a problem. I think disabled Americans are still an afterthought in policymaking! Which is why we’re having this conversation, right, [laughs] and launching this work. And I think part of it is that it’s so important because we, especially with this economic work, I think oftentimes—and this is somewhat answering the question [laughs]—but I think that oftentimes the disability community as a whole is still seen as a community to go to ask questions of and tell about policies versus actually thinking about as part of the policies. And I make that distinction for a really important reason, because I think that when the policy is already baked and made and then the community is told about it afterwards, it’s too late to then really think about how is the policy going to then impact people with disabilities.
When we actually write the policy with people with disabilities in mind from the beginning, then we can think about things like COVID, for instance, how will changes actually impact people who are immunocompromised? How will unemployment policy actually get disabled workers into a job? So, we can make real changes in the policies from the get-go versus having to fill in the gaps afterwards. So, I think there’s an important distinction. And I think it’s important to take that lens because when we’re an afterthought, then it’s very much having to fix things afterwards, kind of tinker around the edges, and we really end up playing kind of a retroactive game of catch up constantly. And then we’re behind decades, like we are oftentimes now. So, I’m sure Vilissa has more to add to that.
VALLAS: And Vilissa, as I take the same question over to you, I’m gonna add an additional layer, which also gets into, as you said when you were introducing yourself a few minutes ago, a big part of the work that you have been a real leader on in the community and that you’re also helping to really lead and build out here at TCF as well. And that’s that, as you mentioned in your introduction, there is more to the human experience of being disabled in the United States of America in 2022 than necessarily just being a person with a disability. There are other things that come into play, other aspects of a person’s identity, whether that be race, whether that be gender, whether that be LGBTQ status and so forth. And so, you’ve really been a leader over the years in pushing the disability community to center and to acknowledge and to talk about and to understand intersectionality and the reality of living at, say, the intersection of ableism and racism, which conspire to compound each other and don’t exist or happen to people in silos.
You actually were the creator of a hashtag that went viral several years ago called Disability Too White that really forced a lot of this conversation and broke open, frankly, a lot of conversation that needed to be happening, but was not happening within a very white-led disability community at the time. So, as you weigh in and pick up the ball from where Kim was just starting to head about the importance of applying a disability lens across our policymaking—rather than, hey! Checking in with folks after we’ve already got everything baked to see how this looks to the disability community, 61 million Americans, one in four Americans just to note that again—I’d love to give you the opportunity to layer on why it’s also so critical to center intersectionality in this work, and especially as part of our policymaking. So, Vilissa, I’m gonna bring you back in here on that.
THOMPSON: Yes. When I began this work, one of my frustrations has been looking at the data and not finding that intersectional understanding. We just give like a broad number for disabled people. And you might get something on gender when it comes to men and women, but the breakdown of race is something that I particularly care about because I know that if there’s a number for across the board for disabled people, if that’s broken down further, the likelihood that the issue could be more grim for those of us of color is pretty spot on. And I think that’s so important to have those numbers that Kim was mentioning because we have a bigger view as to who is the most impacted when it comes to whether it’s employment. I’ve been tracking those particular numbers for the past couple years and know that disabled people of color, particularly Black disabled folks, our employment numbers are sadly lower than our white peers and other racial groups that is also being tracked.
When it comes to education, the cost of housing, there’s so many factors that come into what opportunities disabled people are able to acquire or retain and how their disability plus who they are when it comes to their racial identity, their gender, their orientation, all those things matter. And one of my things I always talk about is that you cannot fragment disabled people. You must look at the whole picture. In social work we call it the holistic approach or holistic perspective. You must see the whole person for who they are to better understand the why: why certain people may be able to get things more easier than others. And it is not because of a lack of effort. It’s of a lack of opportunity, a lack of ability to acquire that without certain barriers, whether it’s prejudice, whether it’s biases, or if it’s systemic barriers to where folks have been systemically disadvantaged because of who they are. All those things matter.
And one of the frustrations that kind of came about when you mentioned Disability Too White is our community’s failure for decades to really analyze what happens to us as a community outside of just disability. We have this saddened mindset of if you talk about anything other than disability, then you are bringing attention to something that’s quote-unquote “not important.” Well, it is very important. It is very important for those of us who understand that disability alone is not the barrier to us getting the things that we have a right to, that we have a desire to. And some of that mindset is due to the over-whiteness of leadership, as to who says what is important. And I think that’s one of the great things about being at this time in this activism is that we are no longer allowing that type of mindset to rule. We are no longer allowing particularly the old guard of the community to tell us what matters. We are pushing them out the way sometimes to really get the full story heard.
And the full story is that we are a multiracial, very big group, and those voices matter just as much, so we can get a fuller picture when we have these numbers. Who is, as I said earlier, the heaviest impact and why, and what can we do to ensure that when we have policies in place, those at the margins truly get the support that they need? It’s always first or ensuring that we are developing policies that involves everybody in its totality and not just those who have certain privileges. So, I think that the intersectionality aspect of this really pushes us forward to be a more inclusive group that really should have been the tone decades ago when this movement started. But as the phrase goes, better late than never.
VALLAS: [laughs] And there are—I love you—and there are real social, societal, cultural implications to all of what you’re describing. But there are also really granular policy implications. One example we were all just talking about the other day—‘cause we’re all working on a report, which is one of the things you do at think tanks, data collection—I mentioned before, it’s not that long ago the census didn’t even have data collection that could tell us what the rate of poverty among disabled people in this country was versus people without disabilities that it does now. And we now know that the rate that disabled people experience poverty at is about twice as high as non-disabled people, right? So, really important for highlighting those kinds of economic gaps and disparities that then inform policy.
But today there is, you know, even though we’ve gotten incrementally better, now we can start to do some of that kind of disaggregation that’s so important for us understanding inequities. But we still have a really far way to go, even with just the data the federal government collects, particularly when it comes to those kinds of breakdowns that help us tell the story about life at the intersection of, say, ableism and racism. Our ability to break numbers out by, say, what is the experience for white disabled people versus, say, Black disabled people or, say, Black disabled women and so forth is still really limited in a lot of cases. And that’s a very granular, maybe even banal, boring sounding consequence of some of what you’ve been describing that further hamstrings the ability of the policy sector to respond appropriately. And Kim, I wanna let you have a chance to get in on that as well ‘cause I know we were just having this conversation about data and how it connects to the rest of the picture.
KNACKSTEDT: [chuckles] Yes, you could’ve seen me on the edge of my seat here. Well, I think that the points that Vilissa brought up are so critical. But I think it’s also, just to build on what you both were saying, with the data, one of the things that I think is such a disadvantage for our data collection is how even the mere definition of disability differs from every single program that collects data across the federal government. And so, we’re here at a think tank. If you think about from a research perspective, if you wanted to just find out how many individuals who receive SSI are receiving vocational rehabilitation, that is a really, really challenging piece of information to collect because the definitions alone don’t match up. And so, just trying to gather that information can be extraordinarily challenging in trying to cross data sets, let alone trying to now disaggregate that data by race and gender and all of the kind of identities we’re actually talking about.
So, I think we actually do have a really big challenge on our hands ahead of us to help kind of understand the complexities of economic security because we don’t even actually have a full understanding of what’s happening right this moment. And so, I think even the numbers that we do know are probably a pretty big underrepresentation of really what is here and what’s happening right now since we’re not really capturing everyone out there.
VALLAS: And that’s definitely some of what will be coming out of this team now that it exists, now that you both are on board.
KNACKSTEDT: [laughs]
VALLAS: So, for folks who are hearing this and going, “Man, I wish I had more research! I wish I had more data, more statistics on the picture for people with disabilities economically in this country,” well, don’t wait too much longer, folks! We’ve got something coming your way that you’re gonna like in the next several weeks. But coming back to the kind of big picture here and some of why The Century Foundation is launching this team right now, some of why the three of us all think that having a serious national conversation about disability economic justice—or put the opposite way, the economic crisis facing the disability community today—is so important right now, of course, takes us to the COVID-19 pandemic.
I wanna be very clear, the economic crisis facing the disability community long predates the COVID-19 pandemic, but this pandemic moment has certainly been illustrative in many, many ways, both in shining a light on pre-existing barriers to economic security that so many people in the disability community have been facing, even three decades after the Americans with Disabilities Act, or ADA, was signed into law. But the pandemic has also, without question, dramatically exacerbated a lot of those barriers as well. I wanna give each of you an opportunity to talk a little bit about this pandemic moment and its significance. Ideally, one would hope this has also been a learning opportunity, that the pandemic has also helped us as a nation, us as a society, learn some important lessons that maybe should not have been lessons, maybe were things we should have known before this pandemic moment, especially when it comes to how disabled people are faring and how our policies treat disabled people, and whether they’re adequate for disabled people to maintain dignity, maintain economic security. But I wanna give each of you a chance to speak a little bit about this pandemic moment and what it has highlighted, exacerbated, caused us to learn in the way of lessons. And Vilissa, I’m gonna head to you first with that.
THOMPSON: I think that I’ve seen a shift, at least in the conversations. For me, at the beginning of the pandemic, I think a lot of people frustrations were about the adjustments that people had to make in how they thought about work and school. Many of us, myself included, understood that working, going to school could be done virtually and is still of value as in-person. And we saw the shift in that. And I know that for some folks in the community who gave commentary at the beginning, it left a bitter taste in some of our mouths because of the opportunities that we have been denied when we asked for this reasonable accommodation and request to work or do school at home and other activities, that those with the power thought less of and didn’t wanna do. So, it was just very interesting to see that we were forced to do something that was always available, particularly as technology has advanced and people realizing wow, this is a great thing to do. And disabled are people like, “Yeah! Very glad that you are now up to speed on the different ways that we can engage with each other.”
And I think two years later, and now, as we are in this thing, just realizing that the lack of wanting to be progressive in how we engage with each other. We see the rush to in-person everything at this point. And also, just the lack of care in the fact that many of us cannot go back to normal because it’s still not safe to. And the lack of feels like empathy and concern for those of us who still need to be protected and considered when it comes to wearing a mask and things of that nature. And we see that in not only the societal attitudes, but also in the governmental attitudes as well.
And I think that for me in watching some people in the community, I just have a disheartening of wondering what would happen to us, for those of us who’ve done the right thing so long, and now we’re watching other people not have the same level of consideration. I think that’s been the most upsetting thing for me, is to see some of my friends who have been so careful in the past two years still having to do so and watching everybody else kind of live their life, and disabled people yet again feeling left behind as we have sadly understood for us to be in this society continuously left behind, even in an event that is so global and also has been disabling in many ways, just really seeing society not caring about disabled people yet again. I think that kind of has been exacerbated for me, just the carelessness and the lack of empathy and concern for your neighbor that we like to say, but our actions do not always convey that.
VALLAS: And many folks in sharing that observation in recent months, particularly as a lot of folks have decided this pandemic is “over,” right—I put that in large scare quotes, “over”—as you describe, have really been pointing out that this is one of those moments that is very eye-opening in demonstrating whether disabled people feel like we are part of the “Us” or whether we are part of a “Them” that folks who talk about us, right, capital “Us,” are really meaning to include in that understanding of who’s on which side of that line.
Kim, I wanna send the same question over to you, but adding the extra and obviously very important layer that the COVID-19 pandemic has been a mass disabling event.
KNACKSTEDT: Mmhmm.
VALLAS: It has spurred the largest influx of new entrants to the American disability community in modern history, possibly globally as well, but we’re focusing here on the U.S. for this conversation. So, as we talk a little bit about pandemic lessons, pandemic impacts, and this pandemic moment in general, I ask this question also hoping that you might speak a little bit to the significance of disability policy, and disability economic justice policy in particular, amidst a mass disabling event.
KNACKSTEDT: Well, you read my mind, and you’re right where I was gonna go [laughs] with my answer, as usual, when we talk. I think this has been, well, you know, there’s incredible challenges with what’s happened over the last couple years. And I do wanna take one step back from that, that we entered the pandemic with the disability community, with all of us, having fought for years with the previous administration and really having entered the pandemic fighting for basic, fundamental rights and trying to maintain fundamental rights, then fought for a year during the pandemic, fighting in those COVID bills that came out trying to maintain fundamental rights as they were trying to be stripped away in those bills. So, I think that actually setting that context is really important because now we’re in a new period of the pandemic where, yes, we’re in a very different state where people have decided it’s over, and we’re not actively fighting legislation in the sense of the ADA trying to be ripped out from under us.
But we do now have a whole new group of folks that have actually, have joined the community through having long COVID, which of course, is what most people call it. You can call it post-COVID symptoms, a lot of different names. But I think it’s really important to kind of take this lens on it because we really don’t even have an idea of how many people have joined our community. And when you think about like the economic impacts of that to the entire country, we have so many folks that really don’t even know that they have rights yet or know how to ask for an accommodation, all the way from early childhood through the workplace that are gonna need accommodations, that may be trying to get accommodations, that are really trying to navigate this whole new system. Of course, if you follow social media, you see our community welcoming folks with open arms.
But this is an interesting time for the country because, again, probably one of the largest mass disabling events we may be experiencing potentially ever. And I think it’s a little bit of a reckoning moment to say, like, are we going to actually embrace kind of a new era of actually really thinking about what accommodations in the workplace and in education look like? Because that is going to be actually driving economic security for the entire country moving forward because we have folks that aren’t gonna be able to work a normal workday moving forward. And that’s gonna be a lot of people, and we don’t know for how long or forever. And we really don’t know enough about long COVID yet to actually, really understand what that looks like. And so, there’s a lot to unpack here, but I think it means that as a country, we have to think about this moment very, very carefully and intentionally and also really embrace all of our new members to the disability community in a meaningful way. So, there’s a lot to unpack. It probably could be a whole episode. [laughs]
VALLAS: It indeed could. And I was just about to say for folks who wanna go a little bit deeper on all of that, we did have an episode recently, a few months ago, featuring some of our friends from the disability community talking about the road ahead for folks with long COVID. So, you can find that episode in our episode archive. And I’ll also suggest that folks go back and take a listen to an episode that I recorded with the great Rebecca Cokley, dear friend, sister, friend of all of ours, colleague of all of ours, who is now over at the Ford Foundation running their brand-new U.S. disability rights portfolio. We talked at the end of 2021 about some of these themes as well, so I’ll send folks to both of those episodes for a little bit of a deeper dive on some of where you started to go, Kim.
But in the last few minutes that we have—and this has flown by so quickly! I knew it would. I feel like we easily could’ve filled three or four hours, the three of us on all the things we wanted to get to—but in the last few minutes that we have, I’d love to end on the note of some of what’s to come, which I’m really excited about and also, which really gets into a lot of themes that we’ve been talking about today, but also talking about in the past several weeks on Off-Kilter, as we’ve been doing a series of conversations about what it would look like to turn policymaking on its head, what it does look like to turn policymaking on its head, and instead of business as usual at think tanks, centering directly impacted people and communities in policymaking. And so, that’s part of actually why I thought this episode would be a nice continuation in some ways of those themes.
And in the last few minutes that we have, where I’d love to go in terms of some of what we preview of what’s to come from the Disability Economic Justice Team at The Century Foundation is some of the changes that we’re working to bring to how policy gets made in the disability policy, disability economic justice policy, space so that we can bring about the change we know we need to see in the world, a.k.a. the unfinished business of the ADA, which we all agree we can no longer afford to talk about only once a year in July when we celebrate the anniversary and talk about how far we still have to go. So, in the last several minutes that we have, I’d love to give the two of you the opportunity to preview a little bit some of the infrastructure that we’re working to build so that we know we can move from nice sounding ideas and campaign platitudes, which we’re glad have started and need to continue to transformational change and to economic justice for people with disabilities. So, Vilissa, I don’t know if you wanna kick off there in talking a little bit about the Disability Economic Justice Collaborative that we’re all building together, and then, Kim, we can tag team a little bit.
KNACKSTEDT: Perfect.
THOMPSON: Yes. I think that’s what I am most excited about is listening to the people, bringing the people who understand these issues, both intimately and also, within their professional scope is so important. And that is definitely what the Disability Economic Justice Collaborative is all about. We have almost two dozen groups and individuals that we will be working with who come from different aspects of the community, different industries. Some are activists within our own work. And I’m just really excited. This is a very intentionally intersectional and inclusive group. And I see it personally as being an example as to what other think tanks and other entities can do when you bring the people closest to the issue or people who know these issues. It’s always at the back of their hand because of who they are, what they’ve experienced, and what they know in their body of work. So, I really see this as us leading the charge, us setting the example as to how you do this work correctly, intentionally, and fully. And not just as a to-do list item to check off, it’s really making it fundamental in the foundation of what you’re trying to build.
So, I think for me, because the collaboration is what I am so excited about to be able to do here, just really bringing forward that work, being able to work alongside with some of my friends, and just really do good work together, as I said, make good trouble. So, I think that’s what I’m most excited about in this work, is to bring members of the community that we know, that we support, and really work alongside with them as what we’re trying to build here at TCF.
VALLAS: And a big part of the model that I’m just so incredibly excited about is bringing those folks together with some of the most powerful think tanks in Washington who are multi-issue organizations. They do critical work that informs policymaking inside government, and yet, until fairly recently, we haven’t had a single think tank. CAP became the first one. Now TCF has become the second. We didn’t even have any think tanks that had dedicated disability projects, let alone a disability lens across their work. So, that is part of the hope here as well, is that building on what Rebecca Cokley and I got started at the Center for American Progress, with you, Vilissa, in the Disability Justice Initiative, that in many ways, this is about bringing that disability lens across the entire think tank sector to change how policy gets made from the inside, and I wanna be very clear, with a lot of excitement and enthusiasm from these think tanks. It’s not like we’re bringing folks kicking and screaming. They want to be doing this work and wanna do it in partnership with the community.
Kim, you also spoke before about the significance of some of what has been happening inside of government, and you, in full disclosure, have been a big part of leading that change inside government, both within the Biden administration, since Biden’s loss is our gain in grabbing you for this team—
KNACKSTEDT: [laughs]
VALLAS: —but also on Capitol Hill, where you played a number of really important roles in both the House and the Senate in bringing disability as a lens across the way that congressional offices and now the White House and federal agencies think about disability relating to other policy work. So, you’re gonna get the last word in sort of connecting the dots to some of the change that we’re working to bring, not just within the policymaking sector outside of government, but inside government as well.
KNACKSTEDT: Yes. So, I think there’s kind of parallel processes happening, which is really important to actually make meaningful change. So, we do have, on The Hill, there’s staff that come together and talk about disability policy, and you have members from new members to members that have been there for a long time leading major committees who care about disability policy and are working together to advance an agenda. And then we have agencies, interagency processes to really advance disability policy. So, from a federal government perspective, disability is being applied across domestic policies. And so, that’s kind of our focus here, and again, as that lens we talked about. And sure, there are things I think we all wanna improve. There are areas we wanna see more of, and at another time, we can get into all of that. But it’s meaningful, it’s different, and it’s a huge step from where we’ve been in years past.
And then what we’re hoping to do with the collaborative is working with these amazing think tanks and all of the different folks that we have coming in to kind of our virtual table really set an agenda to move forward and advance economic security, and how can we actually achieve that in the future? And so, how can we build on relationships? How can we center voices and experiences of disabled people? How can we be resources and host events and actually produce the materials to really think about advancing economic security? And so, working together then, actually starting to develop policies across kind of the pillars we talked about before that actually move this forward in a meaningful way.
VALLAS: And there’s so much more that is still to come and under development as well that I know we’re all incredibly excited about. But I just wanna close by saying how thrilled I am to have both of you as part of this team, both of you at The Century Foundation, and to be in this work with both of you. We’ve only scratched the surface in this hour, and I know that, I already know we’re gonna have to have future episodes where both of you come back and talk about what’s going on and what this collaborative is up to and what the team is up to. But just a huge thanks to both of you for taking the time, but also just for your extraordinary leadership in this space. And I’m really honored to count both of you not just colleagues, but friends. This was a really, really, really fun conversation for me.
KNACKSTEDT: Thank you for having us.
THOMPSON: Definitely. Thank you. This has been fun.
KNACKSTEDT: Mmhmm.
VALLAS: And you can find lots more about where to follow Vilissa and Kim, of course, in show notes and at our syllabus page, TCF.org/Off-Kilter. Follow them on Twitter @VilissaThompson, @KIKNACK for Kim. And you can find links to pieces that they are writing and things they’ve been doing and lots more in show notes. Take good care, guys. Looking forward to having you both back on the show soon. Sending lots of love. [theme music returns]
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 indefatigable Abby Grimshaw. 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 or wherever you get your pods. And for the superfans, you can find a full archive of all past episodes and show transcripts over at TCF.org/Off-Kilter.
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