[00:44:57]
Emily:
I think about it as a ripple effect where if one person starts to change how they communicate, it has that rippling effect where other people begin to change how they think about disability, how they communicate about disability.
[Music plays]
Alida:
Welcome to the Care Work podcast. I’m your host Alida Miranda-Wolff and for the last ten years as a diversity, equity, inclusion, and belonging practitioner I’ve focused on providing care to other people for a living. This is a podcast about people like me, care workers. I explore with a host of guests what it means to offer care and to take care of ourselves in the process.
Emily Ladau is a celebrated disability rights advocate speaker and writer. She recently published a book – Demystifying Disability – that serves as a practical, intersectional guide offering all readers a welcoming place to understand disability as part of the human experience.
I had the opportunity to talk with Emily about what it means to offer care within the space of education, especially education about disability. Throughout our discussion Emily provides examples, tools, and ideas around how to offer care and also receive care, not only in the space of disability but identity overall.
Welcome! I am so excited to have Emily Ladau on Care Work podcast today. I have to tell you that I am absolutely thrilled to host you on this inaugural season, especially because I am such a fan of Demystifying Disability, your book. Even though it’s our first time meeting I really appreciated how conversationally the book was written, and so I feel like I know you a little bit already. Especially because I’ve listened to you on other podcasts, and seen videos on your very active LinkedIn, so I have to say there are two things that really stood out to me about you from the get-go. The first is I extremely identify with the challenge of trying to sum up disability as a category when it is so all-encompassing. And I appreciated how much Demystifying Disability was focused on general principles that could apply and also naming differences. One of the sections that most stuck with me was Person First Language versus Identity First Language and how people make decisions and how you make those decisions. That’s really helped me as a person with disabilities because I am always in this place of: Am I doing things the wrong way for the Disability Justice Movement? And I felt that your approach was really inclusive. And then the other piece is – you have a great way of incorporating humor into a difficult subject matter, and I’ve seen that in so many different places. And I think that injecting humor into hard topics is a form of care, so that totally ties into the idea of care work and this theory I’m trying to build out practically. I’d love to ask you to introduce yourself maybe a little differently than you are used to, which is, if we consider care work to be, and this is very broad, work that involves taking care of other people, especially people we don’t know, who are you but as a care worker?
Emily:
Well, first of all I wanted to say I’m just so thrilled to be in conversation with you and to talk about this particular subject because I spend a lot of time talking about disability. I like to joke that I’m just disability 24/7 and it’s really a constant with me, both because it is an identity and because educating is something that I am so passionate about, and I think that that is exactly where my form of caring really comes into play. The way that I care about people is by educating, but by doing so in a way that I believe gives people grace and gives people room to learn more about themselves, and to learn more about disability, and to learn more about the world around them.
I think that when we are doing social justice work, we can sometimes be very quick to demand that people keep up with us, that everybody be at the same level of learning and education, that we all hold the same values and principles and morals and ethics. And when we are asking that of people, we are forgetting that everyone comes from somewhere different. Everyone has been exposed to different education, everyone has learned different lessons, everyone has been surrounded by different cultures, and so to place the same expectations on everyone is to forget that we are all coming from somewhere different. And yes, I would love to live in a world where disabled people were simply seen for their full humanity and I could put myself out of business. But I care very deeply about creating a world that’s more accessible to the disability community and so to do that I want to meet people where they are on their journeys and say: I understand that you may make mistakes along the way, and I understand that there may be fear and uncertainty, and I am in a position of privilege where yes, I am marginalized and I am disabled, but because of the privileges that I do have, I am able to in many ways serve as a support and a guide for people as they are doing the work of learning about disability.
Whether it’s talking about foundational things like language, like Person First Identity First Language or whether is just diffusing some of the awkwardness that people feel by cracking a joke or by making them feel welcome into the conversation. So I would probably sum it all up by saying that I care through educating but in a way that is welcoming and accessible to hopefully as many people as possible.
Alida:
And I heard you say that you care a lot about this work for a variety of reasons, but that a lot of it starts with who you are as a person and your experiences, both in terms of your privilege in your identities and the ways in which you experience marginalization. I would love to know a little bit more about how you came to be an educator in this space.
Emily:
I was born with my physical disability and so it’s always been a part of my life and part of who I am. And growing up I had a very complicated relationship with my disability. There were times when I wanted nothing to do with it and did not want to be identified by it, and then there were times when it was something that I leaned into fully. And a perfect example of that is my time on Sesame Street, which is something that I like to share because I think that for me it was a jumping off point for advocacy, even though I was only ten years old I had the opportunity to share my story and to do so on this national platform where I was educating kids and their caregivers about what it was like to be me. And I don’t think I realized the power of that quite so much at age ten, but definitely in hindsight I find myself realizing that that was such a powerful way to begin to learn the value of telling my story. And from there I gradually began to embrace my disability as part of who I was.
But it wasn’t until college that I really realized that advocacy and educating was the path that I wanted to go down. I thought that I was going to be a high school English teacher but somewhere along the way I realized that that wasn’t the kind of teaching that I wanted to do. I really wanted to take my life experiences and turn them into something that I could use to shift the world around me. Narratives and mindsets and attitudes, and barriers, and so I started to explore what a career in advocacy would look like and to be honest, I didn’t really know what I was doing. I was sort of building the plane while I was flying it, if you will, but for me being in a position where I have supportive loved ones who said: “Yes, go for this if this is your dream”. And the fact that I am white woman, the fact that I communicate verbally, the fact that I was brought up in a middle-class household where I didn’t immediately need to worry about finding a job to earn money because I was safe and protected, and I could find my voice as an advocate and turn that into a career. That is how I was able to balance the marginalization that I experienced as a disabled woman with the privilege that I do have. I use the privilege that I do have as a jumping off point to become an advocate.
Alida:
It strikes me that your form of care is educating and that resonates with me a lot because at Ethos offered care is one of our values and the way that we define it is we guide others with empathy and compassion, and that element of guidance is really core to how we define that value, and of course the way that we guide is through education in our own practice.
I’m wondering for you, when you are thinking about education as a kind of care, what that looks like in practice, how it comes up in situations for you or how it comes up when you are dealing with people who are very uncomfortable talking about disability and acknowledging disability and navigating these topics from a very different place that we navigate other forms of social identity. Something that stays with me always is in Melissa Dahl’s book Cringeworthy she has a whole chapter on disability and this idea of cringe. And she interviewed a number of disability advocates in this chapter and what they said is – there is a big difference between being disabled and having another marginalized identity – like being a person of color in that people are awkward and uncomfortable and want to avoid you, as opposed to being very confrontational about who you are, commenting on who you are and how you present to the world. So, I’m wondering, one, if that resonates with you, but also, how that shows up in educating others about disability.
Emily:
Yeah, so I have to laugh. I love Cringeworthy and I was actually interviewed for it as well. So, that’s a throw back for me. But yeah, I think that there is a level of awkwardness that needs to be diffused in situations when we are talking about disability, and it’s because people are afraid that they are going to say the wrong thing or do the wrong thing. So, many people would rather say and do nothing, and I think that that’s where we immediately find ourselves not able to communicate because instead of leaning into that discomfort and that learning opportunity, people want to run in the other direction.
And I understand we live in a world where making a mistake can be especially scary and it can feel if you do the wrong thing, you are not going to recover from that. But I also try to see in most people the genuine good and the genuine intent to do better. And so, when I come at it from that perspective, I try to think about the concepts of calling in and calling out and I think that that is a really good way to think about how we express care in this work because there are many times when people do deserve to be called out and not just people but really companies, corporations, businesses. I am probably more likely to be call out, to put them on blast if you will, if it’s not just a someone but it is a big company or corporation that really needs to be held accountable, but if it’s an individual who has said or done something, made a mistake, and I can see that it was not malicious but a genuine mistake and that they are willing to learn, then I’d rather call in, I’d rather take the time to say: “Hey, I noticed that you said this, that you did this. It wasn’t quite the right approach. Let’s talk about how you can do better the next time”. And that takes a lot of labor and a lot of effort. And so, this work that you are doing it is work, it becomes taking your identity and turning it into teachable moments for other people. And I try to remind people that they are not obligated to be a living, breathing teachable moment simply because they are disabled, but in my case, I have found that that is how I take care of people. I want to prevent people from making a mistake from having an awkward situation.
So, I’m the person who is always diffusing things, who is always trying to make it more comfortable. And that’s challenging because I shouldn’t have to make you comfortable with my existence. I wish you were comfortable with my existence, but I also understand that that’s not the world that we live in and so that’s the way that I offer that olive branch to people.
Alida:
I want to stay on this idea of just the emotional tax, the psychological tax, often also the physical tax because when you are in a situation where you are teaching, where you are educating you have to occupy space, hold the attention of the room, there is a lot of work and effort that goes into it, and I’m wondering how do you receive care? What kind of care do you need in order to let go of that load and all of that tax that you are absorbing from your work?
Emily:
To be honest, that is something that I am still learning how to do and learning about myself because the thing about educating about your identity is that when you are done with work at the end of the day you can’t just take your identity off and put it on a shelf and leave it behind at work. It doesn’t work like that. Instead, I am still disabled whenever I finish up working for the day, and I’m still disabled if I’m just trying to sit back and relax and enjoy something.
And so, I’m always seeing the world through that lens and I can’t get rid of that perspective and so it can be challenging for me to separate myself from the work that I do because in some many ways I am the work that I do, and in order to care for myself and to be cared for I had to find the safe spaces to have the very honest and vulnerable conversations about how the work that I’m doing really makes me feel sometimes. And those are not the conversations that we have in public forums, those are the conversations that we have with family and with friends and with people who we know won’t repeat our deepest feelings. And for me having disabled friends that I can turn to has been a gift because they get it. They understand. And we don’t need to have any pretenses before we are talking. We can just dive right into it.
And also, I’m lucky because my mom has the same disability that I do. And so, I have this person who is my mom, my best friend, like, you know, my companion, my partner in crime, whatever you want to call it and I can say: “Hey, this is how I’m really feeling about this.” And she gets it. And so, I think it’s about finding your people and knowing that you have safe spaces to have those honest and real conversations. Not that I’m not honest and real with everyone, but there are different layers to these experiences and sometimes you need someone who you can really break it down with.
Alida:
What comes up for me in this idea of finding your people and finding your community is that it’s such a simple idea but it’s so hard in practice. One thing that occurs to me is just that about a quarter of Americans have a disability but less than 10% of disabled people will disclose within their workplaces, which is where a lot of people find their communities, find their friends, and I can speak for my own experience it took me until I was twenty-six years old to say that I was a disabled person. I have a mobility disability and have done a lot of covering because one, what’s visible in it can easily be hidden with sleeves and two, there are modifications I can make to physical environments that make it a lot less noticeable. And then I have a number of chronic illnesses which of course are more invisible than visible and there was a certain amount of fear for me, if I disclosed, I’m going to be seen differently and in a way that I don’t want to be seen. I want to be seen as strong, I want to be seen as put together, I want to be seen as productive, and all of those messages I’ve been hearing my whole life about as long as you keep trying to find quote unquote a cure, you are not disabled, you are not giving up. And so, there is a lot of stigma attached to it, which, one, makes it hard to say, “I have a disability,” but then there is also just this element of the disability community is enormous.
So, as somebody with chronic illnesses, that’s a very different place to be in than aligning with the deaf community or saying that I have low vision or I’m hard of hearing, or I have a lot of my former colleagues in my last role but also now in this diversity, equity, inclusion, and belonging space I identify with cerebral palsy. And it’s very much not the same thing, even though we have some of the same experiences around stigma, around shame, around awkwardness, and so I’m wondering – How do you find that community of people?
Emily:
Gosh! There is so much in what you said that I want to touch upon, and I think the first thing is you are actually right in pointing out that the disability community is so big and so broad, and we forget that more than a billion people around the world have some type of disability. And it’s not this niche, small community. It’s huge and it’s vast, and it’s the world’s largest minority and yet we treat it like it’s something that belongs on the sidelines. We keep it on the margins of marginalization. But at the same time, once you start to dig into just how big and broad the community is, you recognize that saying disability community doesn’t really do it justice because it’s this huge umbrella term, and even though you are trying to put everybody under the same umbrella, we all have different experiences.
I always remind people that if you met one disabled person, you’ve met one disabled person. And so, because we exist in this strange paradoxical reality where it’s so big a community, but so small in terms of our consciousness, we tend to forget that disability exists even if it affects us. We kind of don’t recognize that it exists outside of us, and we make ourselves small and we make ourselves feel like we are not allowed to say anything because that’s the message that we are being sent or being told: You shouldn’t identify as part of this community, if it’s a community to these people at all. These people being, you know, the people in your life who you are receiving these messages from, and so, I think what I struggle with the most is how do we navigate this interesting cycle that we are stuck in where we are sent the message that we need to be quiet about disability. And so, we are quiet about our disability, but then it’s that quiet that makes other people want to be quiet instead of helping other people be loud and proud. And we just get stuck in this ongoing cyclical cycle of not being open fully about who we are. It’s like a shame spiral that we all get stuck in and when we have a few people who start to break that shame spiral and who start to say: “Hey, I am proud of who I am. This is part of who I am. It’s not always easy but it’s something that I own as a part of me” other people begin to follow suit. And once you are surrounded by people who are owning this part of their identity, it becomes easier for you to open up and to own disability and chronic illness as part of your identity.
And so, I think about it as a ripple effect where if one person starts to change how they communicate, it has that rippling effect where other people begin to change how they think about disability, how they communicate about disability. And sometimes you have to be the stone. Sometimes you are the stone in that situation if you are not finding that other people are embracing their disability, if you are not finding that other people are being open about their disability, then maybe you are the one who starts that ripple effect. And that’s a burden to put on people, honestly, to ask them to be the ones to be so bold and open in a world that tells us that we shouldn’t be so bold and open because it’s those people that so many more of us are able to embrace our identities and ultimately find and connect with our communities.
Alida:
I started to feel a sense of community really before I met other folks who were self-identifying through Alice Wong’s work Disability Visibility, through the recordings that she was putting together and then ultimately through her essay compilation where she was featuring so many different disabled people, having so many different experiences, whether it’s the intersection of environmental racism and disability or queerness and disability, or this tension between the social model of disability and the biological. And it made me feel like I could talk about these things because I honestly identified myself in the pages of one essay in particular of a writer who was talking extensively about being in pain and chronic pain. And how the social model of disability prevented her from in some ways fully participating because she wanted the pain to go away, which would mean in some ways disavowing that disability. And at the same time, she could never really fully participate in her own community of folks who didn’t experience this chronic pain because they would basically tell her to try harder. There has got to be another medicine, there has got to be another tool, there has got to be another spiritual retreat. Have you thought about this might be you atoning for past sins and in going through that I recognize my own experience, especially this idea of, you know, when I’m thinking about the medical model, all the doctors who told me if I just worked harder maybe I wouldn’t be sick.
And then I thought: “Okay, well, I’m going to go to the literature, I’m going to go to books, I’m going to go to websites, I’m going to go to podcasts to try to find people like me. But in terms of finding a place, a physical place where I could connect with other people, that took me years. And so, I’m wondering from your perspective – Where should folks who have disabilities and are looking for that community of care, where should they look?
Emily:
I think the internet is the central place for that and to be honest that’s really where I started to have my own initial awakening when it came to the disability experience. And then, a little bit later I connected with a group of disabled people, actually through an internship cohort and that really was a kick in the butt because before that I think I had been so stuck inside my own bubble of privilege. And even though I understood what it was like to have my own disability, I had not taken the time to look outside myself and to recognize that my experience was one among so, so many. But for people who don’t necessarily have access to a bigger group of people who share disability experiences go online.
I mean, I think for me knowing that I can open up social media and somebody will understand how I am feeling that day is a really powerful thing. And I also think it’s particularly important that you brought up some of the tensions that we have within our own disability experiences where for example, our disability can cause pain and we don’t want to experience that pain, but at the same time we can embrace disability as part of our identity and as part of what makes us who we are. And we have to exist within those tensions but there are some people who project this idea that there is one right way to be disabled. There is one right way to be any identity and that’s just not true. And for me, as someone whose disability also involves severe chronic pain, I would get rid of that in a heartbeat if I could, but I would keep my identity as a disabled person and I think we need to be able to find ways to exist in these messy spaces. And sometimes you can lean into that messiness by connecting with other people online who share your disability, your diagnosis, your chronic illness, your experience. And knowing at least that you are not alone can make a huge difference and I know, I wish that I had very specific places to tell people to go but the problem is that it is so specific, depending on who you are, your needs, your identities, what you are looking for. And also recognizing that where I may go as a white, physically disabled woman is not where somebody who is black, and autistic is going to want to go. We need to find shared spaces and we need to find spaces where we can exist among people who identify in the same ways that we do. And so, I know it feels kind of silly to just say: go online. But truly: go online.
Alida:
Well, that brings up for me too something we’ve been talking about throughout this conversation which is how diverse the disability community is. And it’s something that I really appreciated about your book was that there were some general principles, some practical ideas that could apply regardless of what kind of disabilities you might me interacting with as somebody who maybe didn’t have a disability or who had a very different kind of disability. And I’m wondering for folks listening to this what you might suggest to them or some tools or practices they implement to offer care to others, especially those that they may have really limited information about.
Emily:
For me the most important thing that you can do is not make assumptions about another person. If you are in a situation where you might want to assist someone, or someone may appear to need assistance, ask how you can best assist. It is so important not to assume that you know best for anyone else. And the other thing that I would add is to understand the concept of presuming competence, so not only should you not make assumptions that you know best what another person needs. Don’t make assumptions that they don’t know best. Don’t make assumptions about what another person can or cannot do. Approach each person as an individual and understand that each person has individual support needs and individual preferences, and nothing about how we interact with people should be “one size fits all”. And, when I think about the disability community and how broad and big and diverse it is and when I think about the fact that disability can overlap with any and all other identities, it’s especially important to remember that we can’t reduce people to one particular aspect of who they are and that we can’t just make a guess and what someone needs because we have no context about that person until we begin to learn about that person.
And so, rather than reducing a person to their disability without understanding the context around their disability, let’s recognize the disability as part of a whole person. And that we can’t make assumptions about what that means for a person until we begin to get to know that person. And if in a particular situation that means asking: do you need assistance? or how can I help you? That’s the right way to start.
Alida:
That’s a great point because I will say we have our training menu here at Ethos and we’ll go to clients’ organizations, and they’ll say: “Do you have a disability training that tells you what you are allowed to ask and what you are not allowed to ask?” Which is such an interesting question, but I’ve had this presented to me multiple times when we’ve talked about training on social identity. And I’m wondering what your experience of is that? What are you allowed to ask? What are you not allowed to ask?
Emily:
People love a good checklist and love being told exactly what to do and how to do it, but disability is not like that. No identity is like that. And in the employer employee relationship there are certain ramifications for what is okay to ask and how is okay to ask in terms of you know, collecting demographic data on your employees, or providing reasonable accommodations for your employees. So, there are certain rules and certain ways to go about how we communicate that. But in a situation where you are among a group, you know? You don’t immediately demand information of someone, but at the same time you know, as you begin to engage in conversation you can start to allow sharing about yourself unfold. So, I think the quote unquote rules change depending on the context. It’s not a matter of what am I allowed to ask and not allowed to ask necessarily, but it’s more about how do I communicate with this human being and engage with them in a way that feels authentic, and in a way that allows them to choose what they want to share about themselves.
Alida:
That ties in so nicely with what you were sharing about presume competence. Presume that in a workplace people are there because they can do the things that the workplace is asking them to do and also offering some policies and some practices like reasonable accommodations that allow for modifications for them. It also ties into how I think in K through twelve works, which has been on my mind lately. I was on a podcast called Think Inclusive, which is really focused, I think you are familiar with them, which is really focused on disability in schools and ending segregation between disabled students and abled bodied students in the classroom. And I think about in K through twelve where I have some experience in, I think it’s funny because almost all the diversity, equity, inclusion, and belonging practitioners I talk to at some point wanted to be English teachers and I’m one of those people. And I heard you say that earlier, so I think there is a connection there.
This idea though of – we bet against people before we even know them – shows up in schools and something that I’ve been thinking about a lot recently as all of these debates around how children are educated are coming up in regards to queerness, in regards to critical race theory, in terms of who gets to be in a classroom together is what should we be teaching our kids about disability, both in what concepts we teach them, but also how they engage with it in their actual environments?
Emily:
I think you are hitting on a critical point here and also, I think when we start young, when we introduce disability to children as opposed to keeping it hush hush and allowing it to remain taboo, I think that that’s how we begin to create this mindset shift and this attitude shift. And when we allow children to be curious and to engage, and to learn about the world around them, that’s how we are going to create a more accepting and accessible future. And so, that means that it’s incumbent upon us as older generations to really be mindful about how we are thinking about and talking about, and communicating about, and engaging with disability.
And for me I am all about allowing children to engage in potentially messy conversations to say things that may not necessarily be appropriate and to learn from that, and quite frankly I sometimes think that that would benefit adults too at this stage of the game. I think that’s where we are at with disability. But it means that we can use inclusive education as a model for the rest of the world by bringing everyone together, by having everyone in their shared space, by encouraging learning, and by encouraging dialogue, and by encouraging people to engage in those complicated conversations. I think that’s how we create inclusion everywhere. So, I think that the principles that we would apply in an inclusive classroom would be much the same of what I would hope to apply in an inclusive workplace, to be honest.
Alida:
Well, that has to be the most perfect segue into my final question [Laugh] which is: If there is one tool, one practice, one skill listeners to this podcast can take away from this time with you, that they can adopt and put in place everywhere they go, what is it? What do you recommend?
Emily:
I think everybody is looking for the magic answer, but my answer there is to be a good listener and that is so applicable to almost every situation that I can think of. But taking the time to listen and to be a good and active listener is I think the best possible tool that you can use in any scenario. But especially when engaging with someone with a disability, especially if you are unfamiliar with disability. Take the time to listen. And I will add to that, even though listening is the one tool that I recommend, take the initiative to learn. Don’t always put that burden on the other person, even though being an active listener is important, don’t demand that people give you something to listen to. You may need to seek it out for yourself.
Alida:
And on the flip side, what is something you can do if you are a care worker to care for yourself?
Emily:
Know that it’s okay to sometimes flip the switch off. I know that as someone who is passionate about this work and whose identity is part of the work, I feel like my switch is always on. Sometimes it’s okay to turn it off, take a break, and take something for what it is, and know that if you don’t fight this particular battle that there is going to be another battle to fight tomorrow [Laugh] .
Alida:
Well, Emily thank you so much for all of your time and all of your insights on today’s episode. Before we go, where can people find you?
Emily:
I am pretty easily findable online; you can go to emilyladau.com or I am on Twitter @emily_ladau. I’m on Instagram @emilyladau and I’m on Facebook at Words I Wheel By.
Alida:
And is there something you would like to call folks to do leaving this interview today?
Emily:
I would like to ask that they continue their learning process because you’ve now heard from one disabled person, but I am only one person so, keep learning and keep going.
Alida:
And I’ll mention here that Emily’s book Demystifying Disability can be found anywhere books are sold.
Emily:
Oh! Thank you so much. How did I forget that part? [Laugh]
Alida: [Laugh] Thank you so much Emily.
[Music plays]
Alida: This podcast is a collaboration between Ethos and Alida Miranda-Wolff.
Episodes are available anywhere podcasts are found.
Your host is Alida Miranda-Wolff.
The opening theme Vibing Introspectively was written and recorded by Logan Snodgrass.
Production assistance was provided by Sonni Conway and Miera Garcia.
All sound editing and production was provided by Corey Winter.
[End of recording] [00:44:57]
