LAUREN: But what if we put dignity at the center of the conversation and community at the center of the conversation and the rights of people to live in the community and participate in the community where they live? Our starting point matters so much.
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ALIDA: Welcome to the Care Work Podcast. I’m your host, Alida Miranda-Wolff. This podcast is for anyone in the business of providing care. Whether you’re being paid for it or not, you’ll discover what it means to offer care and how to take care of yourself in the process. For the last ten years, as a diversity, equity, inclusion and belonging practitioner, a care worker myself, I’ve focused on providing care to other people for a living. Now with this podcast, I’m hoping to create a culture of care in my community and help you do the same in yours.
ALIDA: What would it look like to truly commit to changing the way things have always been, to honor and center the human dignity and well being of people with disabilities? This is the question that my guest, Lauren Schrero Levy, a disability rights advocate and lawyer, has been working to answer for the last decade. As the founder of the nonprofit the Nora Project, which provides education on disabilities to teachers in schools and as an advocate and human rights and civil rights attorney at Equip for Equality, Lauren is doing all she can for people with disabilities, especially those experiencing intellectual disabilities, to be able to be honored as what they are, whole people. Hi Lauren.
LAUREN: Hi Alida Thanks so much for having me.
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ALIDA: I think one of the reasons that we’ve clicked so much is both of us come from this disposition of care and wanting to help people meet their needs. And so I think that’s a great place for us to start and ask you, how are you a care worker?
LAUREN: In so many ways, I feel like everything, every aspect of my life involves some consideration of care, you know, in relationship with my partner, my children, my family members, and then, of course like, my work, my commitment to disability rights generally. You know, from the outside, a lot of people would probably look at me and identify the care I provide to my disabled child as a central component of me as a care worker. My daughter Nora has complex physical and intellectual disabilities, and certainly a lot of my physical and emotional energy is spent thinking about how to enable her needs to be met. I don’t know if that feels like work to me. In a lot of ways, it feels like education and love and privilege to be able to support her in those ways in terms of my work-work. So my work at the Nora project. Let me give you a little background on the Nora Project. First, in case folks don’t know about us. So the Nora Project is a nonprofit organization that provides disability studies, curriculum, and inclusion training to schools. For, you know, our focus is preschool to high school. The Nor project isn’t in the classroom. We provide education to educators and give them tools to support students. And my particular role as the founder was to build a team and make sure that my team was supported. And so I felt like a lot of my job was finding out how the folks who were doing the hard work of creating curriculum and supporting teachers, you know, were having their needs met. I’m in a new role at a new organization now where I’m working more directly with clients who need individual support. So it very, I’m much closer to the impact now, and that feels different, too. And so much of, I think, care work is listening and trying to really understand what people need and want for themselves, and then, you know, creativity and brainstorming around what the possibilities are for meeting those needs.
ALIDA: What’s so interesting about how you describe it is just the amount of humility there, because the Nora Project is pretty established in this space, has been around for almost a decade, really advocating for the needs of kids in schools and treating them in a way that, unfortunately, our school systems don’t treat kids with disabilities. And so I would love for you to talk a little bit more about your focus on really honoring the dignity of kids with disabilities and how that may have translated into your recent career decision to do this in a legal way.
LAUREN: Dignity is really, you know, the core component of all of this dignity, humanity, I think it’s so common, and I can’t exactly get my head around why, to think of folks with disabilities as somehow less fully human or less in need of certain basic dignities. And that really is the core of the work of the Nora Project and kind of the organizing factor in my life now. People are people, and there’s a minimum level of dignity and support and acknowledgment that I can’t believe we struggle with so much. And I know it isn’t just around disability. There are all kinds of factors that can lead people to treat others as less than. But, yeah, I mean, that is the work of the Nora Project. It’s also been interesting for me. I’m now working with adults with intellectual disabilities, and the problems in this space are essentially the same, I’m finding, as the problems in the education space, which is that we have poured money and effort and system building into keeping folks separate, and now we say we don’t have the money to support them in an inclusive setting. Right? We have designed all of our systems to segregate and otherize and really dehumanize, like, an entire class of people. And we just don’t have the tools or vision or, frankly, will, to see folks, especially folks with intellectual and developmental disabilities, as fully human. So when I think about this, when I talk about it with people who aren’t as familiar with disability rights, the concept of dignity and humanity is really just at the core of this. And that seems so basic.
ALIDA: Sticking with that for a moment here, I mean, you are doing civil rights work, you’re doing disability rights work, and you’re talking about how this is so basic. But obviously, we built a very, very intense apparatus to make sure that we would keep people with intellectual disabilities, developmental disabilities, physical disabilities separate and actually out of visibility. Based on your experiences, why did this happen? Why did we do this?
LAUREN: It’s a good question. I don’t know all of the answers, but I can tell you, in education, you know, for a very, very long time, it was believed that kids with severe intellectual developmental disabilities were un-educatable, right? Like that they couldn’t learn, and so they weren’t even entitled to go to school until not that long ago. And then when the world realized that was a completely wrong view, instead of reorganizing schools so that they could serve all kids, we developed a whole system of segregated special education so that it wouldn’t disrupt what was already in place, but would allow kids, in sort of a technical sense, to go to school and learn things, but know requiring them to really be a part of their communities. And I think that carries through to everything else. I’m now visiting, essentially, nursing homes for people with intellectual disabilities. There are seven of them in Illinois. Here where I’m working, there are 1600 Illinois residents living in nursing homes without access to work, without access to their community, who don’t get to choose what they eat in the morning or at lunch or what they do. They have no meaningful engagement. And it’s almost like we’ve taken those segregated special education classrooms and turned them into these institutions that are in disrepair. And this actually calls up a story. I made a presentation once at, uh, a corporation. It was just a dis 101 intro to disability, you know, things you should be thinking about presentation. And when I finished, one of the participants raised their hand and said, this kind of education makes sense when you’re a kid, and I’m so glad you’re doing it, because, of course, there are kids with disabilities in school, and kids need to know about other kids and about themselves and about each other. But, here we are at this big, fancy corporation, and we don’t have people with intellectual disabilities here, so why are we talking about it? And I said, well, what do you think happened to those kids you went to school with? Where are they now? What are they doing? What are their lives like? Who’s engaging with them? Why aren’t they here? I mean, we get so socialized to the idea that they belong apart that we don’t even question their absence. And that has to change.
ALIDA: Something that I think is so interesting is that you’ve expanded your horizons when it comes to disability. So you started out first with understanding your daughter and her disabilities and starting the Nora Project and building that team, and then thinking about kids preschool through high school, what their education needs would be. And now you’re really focusing on adults and what supports and systems you can put in place so that they have their humanity and dignity intact and are actually able to exercise their own agency. What drove the decision to move from one stage of development to another?
LAUREN: Mostly listening and being curious. When I started the Nora Project, I had zero background in disability rights. I had an intuition on what I thought I wanted, but really hadn’t engaged in an enormous, centuries long body of work that’s already been done in the area. And as I started to engage and solicit feedback, I just realized I had a lot to learn and the original version of the Nora Project, and honestly, it’s cringeworthy to even think of how we started, but we’ve learned a lot, and there’s learning in the story, in the journey. The original version of the Nora Project was essentially based in my belief and understanding of, you know, education as general education and special education. And so we designed a program where essentially general education students would interview their disabled students who were in segregated classrooms and their families about disability, to learn about disability that way.
So I wasn’t even interrogating the basic design of education and the idea that kids are separate. I just assumed in my early work at the Nora Project that that was a given. After our first year, I asked all of the parents of students with disabilities who’d participated to complete a survey. And one of the surveys came back to me and said I felt like my child was the project. And that was really painful and also on point. And that’s when I really started to question the design of the program, you know, the underlying assumptions that were sort of, you know, guiding the curriculum design. And I think that was sort of the beginning. And, you know, every year, the Nora Project solicits feedback from all of our users, students, families, educators. And we have made substantial changes to our curriculum pretty much every year as we solicit feedback, learn more, bring in more, you know, voices and experiences and perspectives into the work. So the evolution has been an openness to listen and understand. And also, I think there’s been a bit of an evolution that I think many of us have gone through just in the last several years as we’ve confronted our own assumptions about belonging and fairness and equity and justice, just taking a hard look inward.
ALIDA: Something that strikes me, too, is you have also dedicated your career to space. So we’re talking about school spaces and classroom spaces, but also now in your legal fellowship, you’re going to these seven nursing homes and thinking about how people with disabilities interact with the space, maybe are confined to a space. And what I think is so interesting about this is one of my favorite conversations with you, because I thought the example was so beautifully put, is you were talking about when we’re dealing with integration, so not keeping people separate, but putting them in the same space together. We have to account for the fact that there might be a conflict in access needs. And the way that you described it to me in a classroom setting I thought was crystal clear, because I think talking about conflicts and access needs is kind of taboo. There’s this idea of, you should just be making spaces that are universally inclusive. And I’ve talked with a lot of folks in the disability rights space in particular who will say that there shouldn’t be this sort of pitting against, but that’s not necessarily what you’re talking about. You’re talking about what does inclusive design look like if we account for the diversity of experience? So I would love to hear from you what is a conflict in access needs?
LAUREN: A conflict in access needs is when the needs of one person directly interfere with the needs of another person. And the example I always give, because it’s personal to my family, is my daughter. One of her self soothing behaviors is to scream, loudly, when she becomes disorganized. In order to reorient herself. She bounces sound off everything she can bounce sound off of. And one of our neighbors is very sound sensitive. And so when my daughter is screaming and banging and reorganizing herself, it’s very disorganizing for her friend. These kinds of needs come into conflict all the time, and even in smaller ways. I think about just me and my husband. My husband’s very extroverted. He loves to approach strangers and strike up conversations about whatever is going on. And I am introverted. I’m shy, I’m self conscious. A lot of times, my husband’s need for social connection can elevate my anxiety. And so these are the kinds of conflicts and access that I think are really part of everyday life. And this is a constant negotiation that we, as people, have to go through with one another to make sure that not all of our needs can be met at once. But there are ways to work together to find solutions that are tolerable for everyone.
ALIDA: One of the things that I don’t think I’ve shared with you before, but. So my uncle has several intellectual disabilities and is in one of those nursing homes in Illinois. One of the things I think about is the space that he’s in. There’s a constant negotiation because we are partitioning space, but we’re not necessarily putting people together who have the same needs or experiences. So my uncle has schizophrenia, and he is also on the autism spectrum, and he’s mostly nonverbal. And his suite mate is an extremely verbal person who wants to be in conversation and also does not have the social intuition or social awareness around things like space, touching, intimacy, et cetera, that, um, my uncle has. Right? Like, there is a clear divide there. One of the things that I think is so interesting is that negotiation and how that plays out, isn’t a conversation. It’s really, do you have clean sheets? Has your laundry been done? Did you brush your teeth? But it’s not. You have a roommate you’ve been living with for two years, and you have completely opposite needs from one another. So in your work with adults, how do you support or advocate in situations like that?
LAUREN: What you’re describing is so right on. And I think one of the enormous mistakes that we make, and this is part of the medicalizing of disability, is that we hear a diagnosis and we assume, oh, like, autistic folks or neurodivergent folks will do great in a home together. Or people with developmental disabilities prefer inherently to be surrounded by others who also have similar diagnoses. This is the stripping down of humanity that I’m talking about. It’s just not looking at the person. The sheets matter so much less the cleanliness of the sheets, the color of the sheets. Let’s not talk about sheets. Let’s talk about who this person is and what they need and what will make their lives fulfilling and interesting for them. I’m only in the beginning of my advocacy work around getting folks out of these state operated developmental centers. But what I’m learning, and this won’t surprise you, is that sitting down and understanding people in their stories and what they want is the key to the advocacy. I met the most incredible young woman who has cp and intellectual disabilities and is living in a home with ten other women. This is part of the larger nursing home facility who have a range of disabilities. And I went and I was sitting with her on, you would call it a couch, but I’m telling you, it was one of those plastic couches that they have in hospitals, and this is the furniture they have in these homes. So there’s nothing comfortable. There’s nothing cozy. Everything is sterile. And at any rate, as I’m sitting with her, there’s chaos all over the home. I can barely have a conversation with her, much less interrogate. What do you want out of your life? There’s no intimacy, there’s no quiet, there’s no calm. And basically, she said, all I want is to make decisions about my day. She said, here I have to do everything they tell me to do, or I get written up. This is another thing we do to disabled people. We punish them for having an opinion about themselves in their own lives. These are such basic things we all take for granted. I do think one of the really exciting parts about the Nora Project is that kids get to know themselves and each other in really authentic and deep ways. They also get to learn stories, know other disability rights activists. And I feel like if everybody in the world could sit down with that woman I met with and just hear her story, they’d be like, this is absurd. This doesn’t make sense. These aren’t stories we center, and they’re not really stories, frankly, we’re that interested in. And I’m confused why? I would love anyone’s thoughts on that.
ALIDA: Well, I think from my perspective, my experience, there’s just this general sense of discomfort. Unlike some of the other social identities that we minoritize or marginalize when it comes to disability, there is this strong discomfort around people with disabilities that makes us not want to see them. So, while we might make a person of color hypervisible or exoticize them, what we do to people with disabilities is we try not to see them. And a big part of that is our own sense of fear, because disability is something you can acquire. It’s something that can, quote unquote, happen to you. But also, I’ve been thinking about this a lot. Why don’t we center these stories? Why aren’t we interested in these stories?
And I do think it actually has a lot to do with our economic system, because in a capitalist system, if you are not able to produce and use your labor to produce in the ways the market calls for, then you don’t have value. And I think when it comes to disability, we one have this really far away impulse from people with disabilities because we see ourselves in them, but we don’t see ourselves in them. But there’s also this sense of they are devalued by the systems that we operate in and are considered difficult in many ways. And I think some of this does come back to this idea of access needs and whose needs get met. And I think that is also a central reason why we don’t focus on the stories of people with disabilities, because it’s inconvenient.
Lauren Berlant, her very last work, it was actually published posthumously, is called On The Inconvenience of Other People. And it’s really focused on the philosophy of being inconvenienced by the presence and needs of others. And I think that the way that we have been socialized to view disability is that it’s an inconvenience. And earlier you talked about the medical model of disability and how we’ve medicalized it, but that’s just another way of making it inconvenient, as opposed to saying what the social model says, which is why aren’t our structures built to be inclusive of people with disabilities? Why aren’t we thinking about access as a primary goal, as opposed to trying to force people into systems that already exist?
LAUREN: Yeah, I love everything you said, and it all makes a whole lot of sense to me and adds perspective to my curiosity. That small percentage argument is the most economic and least human version of how we can approach people’s wellness. The idea that there’s so few of them that why bother? I frankly feel like that’s what’s happening in my daughter’s school district. There are so few kids with needs as significant as, you know, hers. Why not just send these kids to therapeutic programs? Just get them out. It’s so few people. What’s the big deal? Think of all of the work that would have to go in the inconvenience, as you said, Alida. Think of all of the inconvenience that would have to go to figuring out how to keep them here. Okay, well, that’s certainly an economic approach to the argument. But what if we put dignity at the center of the conversation and community at the center of the conversation and the rights of people to live in the community and participate in the community where they live? Our starting point matters so much. And if the starting point isn’t the dignity of every member of our community. Everything that comes after is going to feel disappointing, I think, and people will be left out.
One of the greatest contributions disability rights, disability advocacy, disability justice have made to my life is wildly uneconomic. It’s the concept of interdependence, the idea that the goal isn’t self sufficiency, pull yourself up by the bootstraps. The goal is that we all need one another and that the more that we can provide support for each other, seek support, give support, the fuller our lives will be. What a relief of a concept. And what value does that add? Right? Like, I don’t have to go this alone. And not only do I not have to, I shouldn’t. It changes your view of everything. There’s so much value in what the disabled lived experience teaches, and I think reconceptualizing value as non economic and more quality of life oriented and interpersonal and relational is a helpful starting place for rethinking that.
ALIDA: Which brings me to a question that I’ve been asking a lot in my more general work, especially around things like gender inclusivity. But parents rights and the parents rights movement, especially when we talk about disability and we talk about the infantilization of people with disabilities. I would love your perspective, which I imagine is somewhat complicated, on the parents rights movement and what rights parents have for their children before they’re 18 and afterwards.
LAUREN: It’s so complicated. And there’s a huge tension in the disability rights community between parent advocates and self advocates. Parents are interesting, Alida. On the one hand, a lot of really important advocacy starts with parents know see the humanity of their children. On the other hand, you know, parents are a product of the socialization of their childhoods, and so they bring their beliefs about disability to their parenting, just like we all bring all of who we are to everything that we do. Parents have been a really interesting challenge for the Nora Project. Again, the parallels between what’s happening in schools and what’s happening in, you know, adult lives. But there are many parents who feel like their kids are safer in segregated special education settings because they’ll be less likely to be bullied, they’ll have quieter, well, the theory is quieter settings, more specialized, one on one instruction. And there are all of these sort of beliefs that parents bring. And so a lot of parents are fighting for their kids to be segregated. You know, there’s a ton of research that shows that none of those intuitions actually play out in real life, that, in fact, being in a segregated setting is less safe because there’s more opportunity for abuse without oversight, but also the learning opportunities are just much fewer in a segregated setting.
So, a lot of what I think needs to happen with parents is we have this intuition to protect, and we think that what we’re doing is advancing that intuition. But fortunately, there’s research, and numbers, and case studies that can show that our intuition is actually wrong here. And we’re not serving our kids by arguing for these positions. But, even that within the parent community, I mean, parents can’t see eye to eye. Parents don’t see eye to eye with self advocates. I have to think that education is the key. But I also think shifting our concept of disability as being something so wildly different and distinct and special that it needs a special approach. Right? Humans are humans, and if we can start there, there are things we can all learn.
ALIDA: I feel like that’s a perfect segue into my last question, which is, if you could give one recommendation to folks who have been with us through today’s episode, what would that be?
LAUREN: I think it would be, to really take some time to study the concept of interdependence. I think it’s one of the principles of disability justice that is most universal and most both freeing and community building. There’s so much that’s been written about it, so many great articles, great art. So, as I was thinking about the concept of care work and what it means to give and receive care, I was just taken back very quickly to, you know, the concept of interdependence and disability justice. So I think that’s a great starting place for people’s learning.
ALIDA: Well, thank you so much, Lauren. It’s been such a pleasure talking with you.
LAUREN: Likewise. I always love talking with you, Alida.
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ALIDA: Thank you for listening to Care Work. Please share this podcast with other care workers in your community so that we can collectively create a culture of care.
This podcast is a collaboration between Ethos and Alida Miranda-Wolff.
Your host is me, Alida Miranda-Wolff.
Theme music “Vibing Introspectively” was written and recorded by Logan Snodgrass.
Production assistance was provided by Ivana Savic-Grubisich.
Audio editing and podcast post-production were provided by Organized Sound Productions.
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