The Kelsey is excited to be working with the Century Foundation’s new Disability Economic Justice team. As we begin that work, Micaela Connery, Allie Cannington and Fatimah Aure were featured on the Century Foundation’s “Off Kilter” Podcast where they discussed The Kelsey’s work and how we are working to change housing policy by centering the voices and needs of people with disabilities.
Sixty-one million Americans, or roughly one in four, live with disabilities. Yet people with disabilities have at best only been an afterthought when it comes to housing policy in the United States, without a seat at the metaphorical table to inform how it gets made. We’re working to change how housing policy gets made… by centering the perspectives of disabled people.
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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. Sixty-one million, or roughly one in four, Americans live with disabilities. Yet people with disabilities have at best been an afterthought when it comes to housing policy in the U.S., much less at the metaphorical table to inform how it gets made. But a new organization called The Kelsey is working to change that.
So, after a great set of conversations with some of the folks behind the Next100 about how they’re working to turn the traditional think tank model on its head, we at Off-Kilter have decided to keep the conversation going about what it looks like to put people at the center of policy change.
So, for this week’s show, I sat down with three of the powerhouse disability leaders behind The Kelsey, Micaela Connery, Allie Cannington, and Fatimah Aure, for a look at the story behind the organization and how it’s working to change how housing policy gets made in the U.S. by centering the perspectives of disabled people. You can learn lots more about The Kelsey at TheKelsey.org, and as always, in show notes. Let’s take a listen.
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Micaela, Allie, Fatimah, thank you so much for taking the time to come on the show, I have to say I’ve been really excited for a while to get to visit with you guys hearing about what The Kelsey is up to. But I’ve been really looking forward to this conversation for Off-Kilter as well. So, thank you for taking the time!
ALLIE CANNINGTON: No problem.
MICAELA CONNERY: Thank you. Thanks for having us.
VALLAS: So, before we get into the model of the organization and some of the amazing work you guys are doing, and really frankly, how you guys are changing the face of how housing policy is made, I’d love to give each of you the chance to talk a little bit about how you each come to this work and to introduce yourselves to Off-Kilter’s listeners. So, Micaela, I’m gonna start with you as the co-founder of this little shindig called The Kelsey. Talk a little bit about how you come to this work.
CONNERY: Yeah. Well, again, thanks for having us. Really excited to be on here with our team and with you. I have really since a pretty young age been focused on disability access and inclusion because of my cousin Kelsey, who is the co-founder of The Kelsey, an organization named for her, which I’ll share more about our story. But Kelsey and I were born three months apart and really went through every life milestone together. We were raised very close together, and so access and inclusion and being an ally towards access and inclusion has just been pretty fundamental to my entire life and career.
And prior to The Kelsey—and maybe we’ll comment why we think inclusive, disability-forward housing is so important—prior to The Kelsey, my work was mostly in school-based inclusion and education. And while I think we have a long way to go still in truly inclusive education access and have seen in our last two years all those challenges, I think we’ve actually had some progress around disability access and inclusion in schools. And I saw with my peers in school and with youth that I worked in, in another non-profit and in Kelsey’s own life, that that really, like the floor fell out from underneath when people graduated schools and went into the adult world. And so, that’s really what brought me to focus pretty exclusively on housing and community-based inclusion and how we actually build affordable, accessible, inclusive communities for all people. So, that’s my journey.
VALLAS: And there’s so much more to dig into all of that, but that’s exactly why we’re having this episode! So, I feel like you’ve given folks a nice little teaser that we’ll come back to you on multiple fronts.
Fatimah, I’m gonna turn it next to you to talk a little bit about how you come to this work. So, same question to you.
FATIMAH AURE: Great. Thank you so much for having us and highlighting The Kelsey. So, for me, I have a genetic condition, genetic neurological condition, that my mom also had, and my mom was very involved in advocacy and funding for the rights of people with disabilities. And unfortunately, she passed away in 2019, but that is how Micaela found me. I actually wrote a pretty extensive blog post about being newly disabled and using a cane for the first time, and that post is what made Micaela reach out to me. And so, it was also the fact that I had a pretty extensive non-profit career and the fact that I’m a San Francisco native. But those three things are really kind of what led me to The Kelsey. And I’ve been on board since last summer, and it’s been fantastic. So, fighting for the rights of people with disabilities is kind of ingrained in my blood, so.
VALLAS: And you are on board with The Kelsey as the director of field building and capacity. So, there’s a ton more that we’re gonna wanna get into in terms of what the work looks like and how you’re bringing folks to the work and to the table.
Allie, you’re gonna get to bat cleanup here and talk a little bit about how you come to this work.
CANNINGTON: Yeah, thank you so much for having me. So, I come to this work as someone with physical and mental health disabilities. I’m a white, queer, Jewish Bay Area, originally grew up in The Bay. And when I became politicized in terms of disability, when I was 17, that was really a springboard to number one, the privilege to even have a political framework around disability, but also a jumping off board to being really humbled to organize with people with all different types of disabilities across the country and here in California, as well as locally. And across the board, regardless of disability type or background or identity of folks that I would connect with and organize with is that housing was always a number one or top two issue problem facing their lives.
And so, when I came to The Kelsey with its explicit focus on housing that I really hadn’t seen yet in my own experience working in the disability rights world of an organization that really has an explicit focus on housing, I thought, this is a place to really dig deep and be intentional about bringing other disabled folks in, as well as paving the way for policy solutions that are needed so that people get their needs met and can live their best lives. And so, I’m really humbled to be on a team and to really help advance disability-forward housing solutions across the country.
VALLAS: And I can’t think of a better segue into talking a little bit about what the story is behind this organization and how it’s seeking to tackle the issue of housing for the disability community. So, Micaela, I’m gonna turn back to you to tell some of the story. You started to get into it. You started to bring in who is Kelsey, right, into some of the story here. But tell us the story behind this organization. How did The Kelsey come to be? And talk a little bit about the model of the organization, how you’ve constructed it. This is a little snapshot of the team, but you guys have a lot of different moving parts right now.
CONNERY: Yeah, we do, indeed. We are a still relatively young organization but have made a lot of progress in a short amount of time. But our story, as I mentioned, really did begin with Kelsey. She actually passed away in 2018, right around the time when we got our first round of funding for The Kelsey, which was both pretty remarkable. We did not intend for this to be a legacy organization, but it has become that way. And as I mentioned, when I was in my 20s living in my parents’ basement as a proud cellar dweller, working for an education non-profit just out of college, and my cousin Kelsey was also living in her parents’ home, I will just say that while Kelsey didn’t use verbal language to communicate, she made it very clear in all of her modes of communication that she was ready to go out on her own. And it was really interesting because, like I said, around major life milestones, the universal experience of wanting both independence and community, that that is a universal need and something Kelsey and I went through very much around the same time.
And as I saw Kelsey, you know, what took me kind of a six-month transition to find housing that was on my own outside of my parents’ home took Kelsey almost six years. And what I realized in that process was two things. One was that Kelsey’s housing search was not unique. In fact, it was an example of what many other people with disabilities were going through. I often thought maybe Kelsey’s housing challenge was unique to her level of support needs or where she lived. But no. In fact, the lack of affordable, accessible, inclusive housing was much more universal. And in that, that actually, Kelsey was privileged. She was from a white, upper-middle-class family, a family that has been involved in social service and education and disability services and were able to navigate and advocate and even put their own personal resources into it. And so, in many ways, not only was Kelsey’s situation not unique, but it was, you know, there were many individuals experiencing even more acute housing gaps in their lives.
And so, without going too much into sort of like the whole founding story, that really just led me to focus, okay, we got to, this feels like a solvable problem that nobody is really addressing at scale. And that really led to I, as a graduate student, launched The Kelsey as part of a social innovation and change initiative at Harvard Kennedy School. And when I started the work, I think two things that are still really fundamental to our model is one, that I did a lot of case studies and went around and visited different both housing and disability orgs. And what I found was really interesting in the spaces that there were interesting one-off housing developments, and then there were really passionate and experienced advocates. But that those two sides of a really important coin weren’t necessarily moving in sync. And that if we really thought about building an inclusive housing future that we needed both to demonstrate what works and what those models would look like and meet immediate housing needs on the ground. And that we, for 61 million Americans, we’re not gonna solve a housing crisis 200, even 1,000 homes at a time, so that we also need to go upstream and look at the systems, policies, funding mechanisms, programs, field leadership, all of the stuff that would create the market conditions so that inclusive housing can become the norm.
And so, that’s still really fundamental to our mission, is this feedback loop of build communities and change systems where we both develop, on the ground, affordable, accessible, inclusive, disability-forward housing and then also lead advocacy and field building so that communities like that can become the norm, not just by The Kelsey, but by many organizations.
And the other thing that I think is really fundamental to our work is as a person who doesn’t currently live with a disability but considers myself a passionate ally and member of this community, I was shocked to go out and meet organizations where all of the housing models that were being developed for not being co-developed by people with and without disabilities. That there were not disabled leaders at the table and defining and driving and being a part of creating what would an inclusive housing future look like. And that’s obviously unacceptable on a lot of levels, and we can share more on that. And so, just as Kelsey and I were co-founders, we also have a team and advocates and consultants and that everything in our work is really co-led by people with and without disabilities, which was a part of our founding story and still is a fundamental part of how we approach it and frankly, do the work better because we are that way. So, that’s how we came.
VALLAS: And I had the good fortune to get to meet you and connect with you for the first time, Micaela, several years ago, when I was still at the Center for American Progress and getting some of the disability work started there. And you and I were remembering having met at one of those events in the before times when the in-person events were the thing that we all did and went to! So, it’s pretty amazing how much you have been able to put in place and get off the ground in just such a short period of time since, I think, meeting in 2017 or 2018.
VALLAS: So, just really pretty incredible.
Allie, I’m gonna bring you in next to help us paint a little bit of the national picture here. Micaela’s been sort of alluding to it, that this was not a problem that was specific to Kelsey, right? This is not a problem, housing barriers for people with disabilities, it’s not a problem that’s specific to just a handful of folks. It’s actually a national crisis. But the national conversation on the housing crisis, which was gaining attention even before the COVID pandemic, rarely ever really includes what’s going on for folks with disabilities. And rarely is the experience for people with disabilities, which is even more challenging than sort of the average housing crisis for folks without disabilities, very rarely actually gets centered in that conversation. And at the same time, we’re counting now 31+ years since the signing of the Americans with Disabilities Act. And as Micaela was referencing housing, and Allie, you were referencing as well, housing is core to independent living and all of the promises of the ADA. Paint a little bit of a picture for us about what does it look like when it comes to access to affordable, accessible housing for folks with disabilities in the U.S.? What’s sort of that national landscape looking like? We’re obviously in a pandemic but know that this was not something the pandemic created problems in just the past couple of years.
CANNINGTON: Yeah, Rebecca. No, absolutely. And I just first wanna say that we could spend a whole hour on this question alone. And so, there’s gonna be a lot of maybe unanswered questions, continued questions, and curiosities of the listeners today. And so, that’s a continued invitation to join us in this work.
And so, what does the picture look like right now for housing for people with disabilities in the U.S.? And you said it so, so poignantly that this is nothing new. And I think it’s critical to say that the crisis that disabled people are facing across the country, and multiply-marginalized people, particularly communities of color, are facing across the country in regards to housing is because of a long history of both racist and ableist housing policies and practices that have led us to the stark inequities of today. And so, first of all, when we think about the growing population of people with disabilities, there is 61+ million people with disabilities living in the U.S., and all of people with disabilities, regardless of your type of disability, are somehow impacted by the housing crisis in one or more ways.
And at The Kelsey, we really break it down in terms of the inequities are driven by unreasonably high costs of housing, lack of affordability. So, similar gist that it is just impossible to afford housing, especially market-rate housing in this country. That people with disabilities face some of the highest rates of housing discrimination, as we hear year after year from reported to the Department of Housing and Urban Development, or HUD. There’s also a severe lack of accessibility for people with mobility or sensory-related disabilities. Less than five percent of our nation’s housing stock is accessible to people with mobility or sensory disabilities. That is shameful for this country to have that statistic be what it continues to be. And also, the lack of housing that is ready to accommodate and affirm the delivery of individualized, supportive services.
And therefore, whether you’re a person with a disability who faces one or multiple or all of those barriers, we are in really a state of crisis facing people with disabilities in their housing needs, and we are overdue for a number of solutions at the federal level, state levels, and local levels. And as you said, COVID-19 has only exacerbated an already critical situation. And all of these inequities in regards to housing are disproportionately experienced by disabled Black, Latinx, Indigenous, Asian Pacific Islanders, and other people of color and extremely low-income communities.
And so, the last thing I’ll say in terms of the model of housing that we are spearheading at The Kelsey is built on the history that for generations, the federal government met the housing needs of people with disabilities who need supportive services in their own homes by pushing us, pushing disabled people, into segregated, congregate, and institutional settings. That’s still often the case today, and though we have the Supreme Court case of Olmstead, which really dials down into Title II of the ADA, which says we as disabled people have the right to our services in our own homes. And so, we said as a country, “Yes, we do not want institutions. We need community-based, affordable, accessible housing options.” But while the federal government has had some, not nearly enough, investment on Home and Community-Based Services, there has also never been the commensurate supply of affordable, accessible, and integrated housing invested in at the federal level, as well as state and local levels to really meet the needs of millions of disabled people, particularly centering those who are extremely low-income and low-income who use supportive services in order to thrive.
VALLAS: You’ve started to sort of get into what my next question was gonna be. But staying with you, Allie, for a moment, and Micaela and Fatimah please feel free to jump in. I know you guys have a lot of thoughts on all of these different parts of the conversation, but as we continue to paint that national picture, you’re starting to identify, Allie, some of the structural barriers, some of the policy failures that are all kind of conspiring to create a housing crisis that’s on steroids for folks with disabilities compared with the housing crisis that we already face nationally when you think about the availability of affordable housing and you layer on the need for it to also be accessible.
Are there any other structural barriers or policy failures that you wanna plug as we start to paint this picture? Part of what’s in my mind as I ask that question is obviously, there’s real intersections on the affordability side with the low wages that folks with disabilities often face and inadequate public benefits, for example. SSI, Supplemental Security Income, is a program we’ve talked a lot about on this show because it’s very close to my heart, as folks know. But SSI benefits are not enough to afford rent anywhere in the country, a statistic that you guys have really been out there trying to help blend into a larger conversation about affordable, accessible housing. Talk a little bit more about some of the structural barriers in how all of this combines into the larger picture you were just painting.
CANNINGTON: Yeah, thanks for lifting that up. You beat me to it. I mean, we have a poverty trap facing millions of disabled people of all different ages across the country. But yeah, you’re absolutely right. Every year, the Technical Assistance Collaborative puts out a report called Priced Out, which reminds us every year that there is no housing market in this country where someone living on SSI can afford rent. Like…that is a failure of both our system of Social Security as well as our housing system and I’m sure many others. And I think at The Kelsey all of the different structural barriers and policy barriers that we are identifying by what we’re learning on the ground as we’re developing the solutions we believe are needed is that there is just a continued siloing of issues and systems that when it comes down to the actual disabled person who’s living their lives, there’s no siloing of those systems. They are experiencing all of the failures of SSI, you know, the inability, the waiting list to get HCBS or the waiting list to get a housing voucher. All of those things are compounded, and it leads us to some of the root issues I spoke to earlier.
And I also just wanna say that with any type of structural barrier, the only way we can dismantle it and create new solutions is by having those with lived experience at the table, and not just at the table, but informing and in the decision-making roles of what changes are made. And so, whether that is the overall severe underinvestment in housing in this country, federally-assisted housing, whether we’re looking at the barriers within the tax credit system, which is under Treasury, or we’re looking at the housing decisions under HUD, the Department of Housing and Urban Development, or the decisions related to Home and Community-Based Services, which in the Department of HHS, there need to be disabled people that are supported in their education and their skill development and their lived experience to inform how these structural barriers can be taken down.
And one thing I also wanna add is there was a report released last month that we’re, with our allies and colleagues, are gonna be taking more action on. But the Inspector General of the Department of Housing and Urban Development came out with a report that told HUD, as well as the rest of the country, that the Department of Housing and Urban Development has inadequate policies and procedures for reasonable accommodations. What that means is that the millions of people with disabilities who need accommodations in order to have equal access to housing support are not being met.
And so, there has been—it’s important to count the wins because if we don’t count the wins, all we hear, all we feel are the losses—we have come far in terms of getting incredible programs legislated like Section 811 or the Housing Choice Voucher Programs and so on. But we still have much more ahead of us when the Department of Housing and Urban Development, who we are building allies within, has still yet to have adequate policies and procedures for ensuring that disabled people have their accommodations met in order to access housing.
CONNERY: Allie, though, I do wanna just cut in there because I don’t want hearing that to say HUD has like, or that in any of our systems, we’ve done enough to fund 811 or housing choice vouchers because I do think—
CANNINGTON: Oh, 100 percent.
CONNERY: I think, yeah, I think that our investment in, when we look at the scale of the lack of housing for people with disabilities, our subsidy that we’ve seen go towards this issue is almost comical in terms of just being a drop in the bucket [chuckles] of how many people we have not yet provided adequate subsidy to serve. So, I just wanna name that because I don’t wanna take anyone off the hook that we are far along in that journey. I think we have a long way to go.
CANNINGTON: One hundred percent.
VALLAS: Oh, it’s such an important point. And I feel like at some point you end up with like layers of Russian dolls on Russian dolls with all of the terrible statistics. But I’ll throw, you know, folks are probably, if they listen to the show, they might be familiar that yes, we have an affordable housing crisis nationwide that is not solved by our affordable housing programs, which obviously help some people, but only help a very small fraction of people. About one in four eligible families end up receiving housing vouchers. That was a pre-pandemic problem that has only been exacerbated as the affordable housing crisis has gotten worse and the pandemic has thrown fuel on the fire. But as you guys are pointing out, you’ve got to layer in there, OK, well, if that’s the state of play for folks without disabilities, if you add in that it’s not just affordable housing you need, but also accessible housing, the supply goes down even further whether we’re talking about private market or whether we’re talking about housing that’s through affordable housing programs or subsidized in that way. So, just really, really tiny, tiny, tiny drop in the bucket currently being met is what you guys are rightly describing.
Fatimah, I wanna bring you back in here to help put a little bit of a human face on this ‘cause we’ve been throwing numbers around. And Micaela shared the story of her cousin Kelsey and the six-year challenge to find housing solutions even with great privilege. But you guys have been working with a lot of folks in the community, hearing a lot of stories, collecting a lot of stories about folks with disabilities facing housing barriers and what that means as then a barrier to economic justice, to dignity, to independent living for people with disabilities. Can you share a few stories of folks in your network, in the community The Kelsey has been building and working with facing housing issues? You shared before that you wrote a blog about your own, some of your own experiences, but help us understand a little bit of how this plays out in individual people’s lives.
AURE: Thank you, Rebecca. I am gonna give a story about my mom ‘cause that’s the person with disabilities whose story I know the best, but I’ll definitely open it up to Allie or Micaela if you want to chime in at all with any additional stories.
So, for about 25 years, my mom lived in almost a Kelsey-appropriate housing situation. But she was in a building that was affordable and accessible, but it was not inclusive of people both with and without disabilities. So, it came close, but not quite. It was a building where the residents were basically segregated from the rest of the community because you basically had to have a disability in order to live there. But it was affordable, which was great. My mom was actually on SSI, so I understand the challenge of people being on SSI and not being able to afford housing. And then it was fully accessible. In terms of the building itself, it was very thought through about being accessible both for people with cognitive and sensory access needs in addition to wheelchair users.
So, I do want, this is a perfect place to plug our housing and design standards for accessibility and inclusion. And these are a set of over 300 guidelines that we’ve come up with for both architects and developers to use in the project that they’re building. And what I will say about the building is that the accessibility factor was one that was kind of ingrained in the process from the very beginning, and that’s what I love about our housing and design standards, in that they take into consideration the lived experience and preferences and insights of those with disabilities, which are similar to the people that are eventually gonna live in our housing developments. So, in that way, it was a really good fit for people with disabilities because the access needs that were used to develop the building and the project went beyond just one type of disability, and it was cross-disability in that it was considering the access needs of a variety of different people.
VALLAS: And I love that you—
CONNERY: And can I—
VALLAS: —started to take us there. Yeah. No, Michela, that’s exactly where I was gonna take the conversation ‘cause I feel like it’s a great segue way into talking a little bit about how you guys are doing the work, how you’re seeking to tackle the affordable, accessible housing crisis for folks with disabilities. Because a lot of what you’re doing is really kind of approaching the work differently from how housing policy has been done before. And the starting point there is part of why we wanted to have this conversation on Off-Kilter and sort of continue a series we started with the Next100, a think tank inside of The Century Foundation, but talking about what it looks like to change the face of public policymaking by putting people at the center of policy. And that really is kind of exactly what you all are doing: putting people with disabilities at the center of housing policy. So, Micaela, take us there a little bit further to talk about The Kelsey’s model and how you all are centering the perspectives of disabled people to inform housing policies, housing design, housing development. Fatimah gave us a great start there, but Micaela, pick it up there.
CONNERY: Yeah, and I think what Fatimah got to is reminding. So, when The Kelsey first launched, we launched with a series of human-centered design focus groups and site visits of different existing housing communities and talked to almost 1,000 to date of people with disabilities, their family members, and care providers and care systems, but really anchoring on the people with disabilities themselves as the primary. And one of the things that I’m really struck by in how Fatimah described this is in talking to individuals and hearing their stories like, we sometimes say “the disability community.” And I think one of the interesting both challenges and opportunities in organizing around disability is how diverse the experiences and that there are, as in all populations, not one size fits all. And disability, when as an organization who anchors on cross-disability access like, even just on our team at The Kelsey, people’s experience of disability is so diverse.
But taking, I think, really from a policymaking and a strategy perspective, taking something that is so individualized and recognizing that the reality is policy gets made on a more systems level and universal basis. We can try to build in individualization everywhere we can, but we also need to draw some universal truths. Because if we wanna make scale policy, we need to have interventions that are gonna cross cut and serve a lot of people. And that’s complicated when you have such a diverse community.
And so, what I was struck by, and that’s very much the case, when starting this work and talking about housing for people with disabilities, it’s like that was sort of a muddy definition. And what I saw over and over again as we talked to folks is that people’s housing needs could really be broken down and quantified by their affordability considerations; their experience of either poverty or income limits, that was really a financing challenge of how do I pay for my housing; an accessibility consideration of what is the built environment, where is it located, how do I move through this space, what’s included in that space; and then the inclusivity, which is like, what are the services that I need and have, what is the community culture and supports and services and experience that I have in that space?
And so, I think that actually, you’ll hear our team talk about often, we use the term “affordable, accessible, inclusive.” That’s not just because of clarity of what we’re trying to move the needle towards, but actually, that when conceiving both a housing policy or a housing program or development or project is really being specific about what are you doing in terms of affordability, accessibility, and inclusivity? And thinking about an individual basis, that affordability could be a universal intervention for anybody who is low income. And sometimes that’s disability-specific, and actually, sometimes that benefits all low-income folks. And so, that’s one area of intervention of how do we engage in our projects and in our policy, deep in mixed-income affordability?
And then, like Fatimah spoke about, other folks talk about the built environment that, hey, actually, maybe I’m fortunate to not have an affordability gap, and I’m a tech worker in San Francisco who can afford to live somewhere. But I actually can’t find anywhere that meets my access needs, and/or I’m an extremely low-income person who has a voucher, and I can’t use that voucher to find the housing access need. And so, both of those people have two very different affordability considerations, but actually, their built environment needs and their access needs could be similar.
And then looking at the third component, the inclusivity of saying access to supportive services is so fundamental. Once people are in their housing, how do they access services that could be incredibly diverse? And that’s good. People should have choices, and we should not a one size fits all define services. But we should be able to, as we do at The Kelsey and through policy, we should be able to define service-linked, service-ready housing so that whether someone uses four hours a week of vocational services or 24 hours of care for significant medical support needs, that they can access those services in the housing that they choose.
And so, I think it’s just important as we talk about these issues to both break down the issue into those three areas to be clear of what we’re talking about, but actually, also, transitioning to the policy, to be clear who we’re asking the policy intervention towards. Because you shouldn’t, it doesn’t make sense if you’re organizing around access to supportive services, that’s actually not probably a HUD advocacy question. That’s much more around HHS and the related state and local service providing agencies or funders. However, when we talk about HUD, we talk about how do you finance housing so that people who use supportive services can afford to live there and bring their services with it? And that you can fund certain staffing models within your building, which is really about the affordability of the building. And then that goes downstream to access to services. And if you’re talking about housing vouchers, your audience is housing authorities or state housing departments and things like that.
And so, it’s just breaking down the issue between those three areas allows us to both honor the diversity of housing needs and housing experiences of this community and be smart—actually, Fatimah has a resource in our Learn Center about this, around advocacy and disability-forward housing. Our Learning Centers are free, open-source resources—of also being smart then in our advocacy and organizing work of pointing our policy asks at the right people who can actually move the needle on those policies, and not just saying broadly, “We need more housing for people with disabilities.” We do, but saying, “We need more vouchers. We need more Medicaid funding for housing-related services. We need live tech incentives for accessible housing,” that all of those are anchored in one of those gap areas and then directed towards the actual policymakers, agencies, or institutions who can move the needle towards the solutions we wanna see.
VALLAS: You guys have a series of very powerful quotes throughout your materials and through your website, which folks can find at TheKelsey.org, and lots more on our nerdy syllabus page of all the work you guys are doing. So, folks can dig in there at TCF.org/Off-Kilter or in our show notes, as they can every week. But one of the quotes that really jumped out to me, and it really, I feel like, speaks to a lot of what each of you has been giving voice to in terms of really kind of the starting point here with the work comes from a partner of yours named Abby Yim with Integrated Community Services: “It’s hard to give value to people with disabilities if you don’t have proximity and see them as real people who have the same kinds of lived experiences that you do. So, the more separation that we have, the less we’re really getting to the problem.”
And I feel like there’s so much in there, but I wanted to give you guys an opportunity to sort of speak a little bit to that. We’ve been talking a little bit about why it’s so important to center the perspectives of disabled people in policymaking in the housing sector and how that has caused you all to arrive at, in some cases, solutions that haven’t been talked about, or in some cases, more targeted and more specific solutions that the business-as-usual policymaking by the usual suspects not talking to disabled folks otherwise miss or ignore or don’t realize really need to be part of the conversation. But that quote, to me, feels incredibly powerful because it also, in some ways, gets at what the value of more inclusive and integrated housing will be on the back end. It’s not just about getting folks into housing. This is also about really the promise of the ADA, which remains unfulfilled. So, would love to just give any of you who want to an opportunity to comment on that incredibly powerful quote from Abby Yim.
AURE: This is Fatimah. I just wanna add in that a lot of disability work happens when people like Micaela and her cousin, Kelsey, a lot of this only starts when people know and have a relationship with someone who is disabled. As I’m sure you and your listeners know, there is a really negative history of institutionalizing people with disabilities and kind of segregating and isolating them away from the community. And I just wanted to say that as my mobility needs began to change and I started using a cane to get around, the majority of my friends were like, “You’re the first disabled person I know.” And what stuck out to me about that quote was really the fact that the more separation that happens between the rest of society and people with disabilities, we’re really getting further and further away from the crux of the problem. So, there is definitely an awareness issue that we at The Kelsey are hoping to solve because it’s not only putting the right policies into place, but also just increasing general awareness about accessibility and the housing needs of people with disabilities.
CONNERY: Yeah, and I think, too, it comes from, I’ve done not a lot, but a little organizing here and there, and I think Fatimah, your point’s spot on of like people care about what’s proximal to them. And so, not only is segregated housing, disability-specific housing, not what we see the policies and the preferences and the personal desire of people with disabilities, but it’s a mutually reinforcing challenge where when we continue on that path, we push people with disabilities out of sight and out of mind from two things: from neighbors and communities and also from housing infrastructure. I do think that because we had such a history of institutionalization where housing was seen as kind of a one stop shop with a service delivery system and that it was all on the service system that state and local and federal housing agencies really didn’t think about people with disabilities, particularly people with disabilities who utilized supportive services, as on their docket of folks they needed to be thinking about when they built or subsidized or made policies related to housing. They just literally didn’t even consider this community in what they did. And that’s at the political or the systemic level.
And the same can be said true for personal levels that people go and say, “We need housing for this type of people in our community because I know my neighbor, and I know my kid’s teacher. I know this other person who’s struggling with this, and I’m gonna go to my supervisor or go to my state rep and talk about this issue.” But if they don’t have people with disabilities in their community and don’t have that visibility and those relationships, they’re also leaving this population out of the narrative when they talk about these issues. So, the history of segregation isn’t just bad for people, but it’s bad for how we think about these changes and who’s included in the housing future that we’re creating together.
VALLAS: And really, who’s part of the “us” and who’s part of the “them,” right?
VALLAS: Which ends up being the kind of, to put a really fine point on it, right, how a lot of policy gets made.
Allie, I wanna bring you back in. One of the questions I’ve been asking over the past several episodes as folks have been talking about what it looks like to change how policy is made by putting impacted people at the center of the conversation is, what are the unstated limiting beliefs that are holding back the policy sector and really us as a society when it comes to particular policy issues? And so, here we are talking about housing policy, and I’m curious and I would love for any of you to weigh in. But Allie, I wanna bring you back in here as well. What unstated limiting beliefs do you see holding back the policy sector when it comes to housing, whether generally or for disabled people specifically?
CANNINGTON: Yeah. I think I’ll just continue on with the thread that Fatimah and Micaela were just going on, which is the fact that the limiting belief that if you are not currently living with disabilities, that it’s not around the corner. [laughs] Like, one of, I’m sure maybe some of your listeners and some of you have heard this phrase before. It’s like, if you’re not yet in the disability community, you probably eventually will if you have the privilege of aging, let alone with the realities of long-haul COVID and the impacts on people with the continuous reoccurring climate crises. Disability is going to be a part of your life if it isn’t already. And so, the fear, which is really rooted in ableism—like the fear of disability, the fear of our own mortality—that can really be a barrier to creating solutions that don’t just benefit people with disabilities, but will benefit everyone.
And I just, you know, we talk a lot at The Kelsey about the need for disability-forward solutions. And I just wanna spell that out. And disability-forward housing for us, and it’s really an answer to this proximity question, which is, it means to center on the perspectives and lived experiences of people with disabilities, particularly multiply-marginalized people with disabilities, and the recognition that designing spaces, policies, programs for disability access and inclusion advances opportunities for everyone. That disability-forward recognizes disability as an identity that is valued and visible and therefore creates spaces where people of all identities can be seen, welcomed, and supported. And so, The Kelsey advances housing and policy solutions that doesn’t want to solve for or dilute disability, but to include and embrace it, because that is the reality of being human, period, but specifically being human, living in this time that we’re living in of pandemic, of climate catastrophe, of an affordable housing and homelessness crisis, and so on.
And so, the inability to reach disability-forward solutions is also created by other beliefs that are very connected to some of the ones I just spoke to. But at The Kelsey, we really talk about how we can reject the scarcity mindset that is understandably so real in the climate that we’re in. But also, it’s not. It’s real in terms of the feeling of scarcity, but when we look at the actual resources available to us as a nation, we have the resources. But we have yet to enable, legislate the will to use them. And so, when we’re talking about building allies and creating alignment across affordable housing and disability rights policy stakeholders, for example, we need to create solutions that don’t, that ideally do not cut the pie that we have of resources even smaller. We need to make the pie bigger. We need to create, we need to add resources and then ensure that there are equitable solutions so that those communities who have been most impacted by the racist and ableist housing policies are at the center and will get their needs met.
I also wanna add one thing is that, still, disability is thought of in a majority of spaces outside our little bubble of disability advocates and activists, is disability is still really associated with legal compliance in the mainstream world. And compliance is deeply connected to fear, fear of legal ramifications. And not to say we need the legal arm of the disability rights movement. It is critical that we meet compliance. But when we’re talking about really creating systems that can work for people with and without disabilities, compliance should be solely the bare minimum. And how can we really have compliance with the minimum? But we put the money behind the compliance, right? We need to fund the requirements that we want, that are needed. And then we also wanna put investment in incentivizing our systems, including our housing infrastructure, to do better. Because we know that when you center the needs of people with disabilities and you go beyond the minimum requirements, that everyone will benefit. And that goes back to why we need disability-forward housing solutions.
VALLAS: Well, and it also comes back to the “us” and “them,” as you’ve all been talking about, right? I mean, the type of budget decisions, to reference what you were describing before, the scarcity model, the thought that, oh, we don’t have enough when we totally have enough. The question is just what budget choices are we making as a society? Who are we investing in? Are we giving huge tax cuts to already very wealthy people so that they can add to their yacht collection, or are we prioritizing, say, the housing needs of 61 million Americans, right? When you start to think about these types of choices from an “us” frame of what would we build for us versus what would we build for the marginalized “them” over there that we hope to have as out of sight, out of mind, so that we, quote-unquote “we,” can make choices that put our money elsewhere, right? I mean, that really is at the crux of a lot of what you’re describing.
We’re unfortunately gonna run out of time very soon, which makes me very sad and makes me wish that we had an extra hour for this conversation because there is so much more that we could get into. But in the last few minutes that I have with you before I let all of you on to the great work that you’re doing and get back to meetings and organizing and everything else you’ve been describing, I’d love to just give each of you the chance to kind of respond to a quick lightning round to close us out of what do you hope that other policy influencers, policy organizations, think tanks, advocates, a lot of the folks who listen to this show, what can they learn from The Kelsey’s model and how you guys are doing things? Not just necessarily for how housing policy is made, but when it comes to how policy is made, period. And obviously, have at it if there are current projects that you guys wanna plug or anything else that you wanna note in our closing lightning round here. But I feel like what do you hope that folks who are listening take away, is really what I would love to end. So, Fatimah, I’m gonna kick that over to you first.
AURE: Sure! Thank you so much. What do I hope that people learn? I think the foremost thing is really that our work shows that our model works, and this model of disability-forward housing solutions needs to be put in place everywhere across the country because having a dual mission which is both to build communities and to change systems is a really unique approach. But I think a lot of non-profit organizations just lean more on the advocacy side, and that is fine. But we are also building the housing that we argue is very much needed in our community. So, the fact that we’re doing both of those allows us a window into the fact that this housing model and the way that we’re doing our work really works and could stand to benefit a lot of people.
VALLAS: And just 60 seconds over to you, Allie, for your thoughts on this same question. What are you hoping folks learn from The Kelsey?
CANNINGTON: Yeah, thank you. So many things. But one would be that if you are engaged in affordable housing or housing policy or housing advocacy, reach out to us and explore ways to embed disability-forward solutions into your work because it will only strengthen the work that you’re already doing. And we wanna be in partnership with you. That’s the only way we’re going to advance and create the world and country that all of us are worthy of, including people with all different types of disabilities.
VALLAS: A great plug folks should definitely take you up on, and lots of info is in show notes and at TCF.org/Off-Kilter if folks are looking to get in touch with you. But Micaela, you’re gonna get the last word.
CONNERY: Yeah, I think that in the spirit of being disability-forward, and then one of the terms that we like to talk about at The Kelsey is building opportunity through inclusivity. That if you are not thinking about how housing development, housing policies, and housing work is disability inclusive, not only are you leaving out or missing out on 25 percent of the market, but you’re also missing out on the chance to think about how to make communities meet more diverse, affordable needs; have better resident experiences; be in more beautiful, well-designed, usable spaces; create true interdependence and thriving community connections. And so, we just have found over and over again that anchoring and centering on the needs of people with disabilities isn’t something we do for a population, but we do with, and isn’t something we do just to meet a subset of needs. It’s something that just helps our communities be better, more resilient, more joyful places for everyone.
VALLAS: I can’t think of a better note to end this conversation on. You’ve been hearing from Micaela Connery, co-founder and CEO of The Kelsey, Fatimah Aure, who’s director of field building and capacity with the organization, and Allie Cannington, who is the senior manager of advocacy and organizing. There’s other folks on the team and a ton you can learn at TheKelsey.org, as well as in show notes and at TCF.org/Off-Kilter. But Micaela, Fatimah, Allie, I’m just so grateful to each of you for taking the time, and I’m just really, really excited to see where this work goes from here with so much that you all have already been able to achieve just since getting started in 2018. So, congratulations and thank you so much for taking the time to come on the show. [theme music returns]
CONNERY: Of course. Thank you.
CANNINGTON: Thanks so much for having us.
AURE: Thank you.
VALLAS: And that does it for this week’s show. Off-Kilter is powered by The Century Foundation and produced by We Act Radio, with a special shoutout to executive producer Troy Miller and his merry band of farm animals, and the 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, Spotify, or wherever you get your pods. And if you like what we do here at Off-Kilter Enterprises, send us some love by hitting that subscribe button and rating and reviewing the show on Apple Podcasts to help other folks find the pod. Thanks again for listening and see you next week.