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The Pioneers Podcast convenes the world’s social change makers to share their knowledge, challenge our assumptions, and offer practical solutions for a more equitable future. The Pioneers podcast is hosted by HeartShare Human Services, a non-profit supporting and empowering marginalized New Yorkers since 1914.
Today we’ll be talking about disability in the media with Emily Ladau. Emily is a native New Yorker who started her advocacy work at the young age of 10. Emily is Editor-in-Chief of the Rooted in Rights blog, which focuses on disability rights issues. Her blog, “Words I Wheel By,” shares her passion for disability rights and social justice. She believes that if we want the world to be accessible to people with all types of disabilities, we must make the disability experience accessible to the world.
HeartShare NY: Welcome, Emily.
Emily: Thank you so much for having me.
HeartShare NY: I want to give our conversation a little bit of context, so if you don’t mind I was wondering if you could talk a little bit about your disability? Then we could jump into more of the media conversation.
Emily: Yeah, absolutely. So I have a physical disability called Larson Syndrome. It is a genetic joint and muscle disorder. My mother and my uncle also share the same disability as I do so disability very much runs in my blood, and it’s always been a part of my life, and part of who I am. Starting in third grade, I began to gradually start using a wheelchair. So my disability is definitely a visible one, and it is very much a part of my identity.
HeartShare NY: It basically shapes your everyday work, not just in activism, but as a writer.
Emily: Yeah, absolutely. They say you write what you know and for me, disability is something that I know very intimately. At least my own disability. I always make sure that people understand that I don’t speak for anyone but myself, but it really has shaped my writing and my career. It’s such a huge part of really, what gets me out of bed in the morning.
HeartShare NY: You are a very good writer by the way. I’m sure many people tell you that, but you’re pieces are beautiful. On your website, there’s a picture of you holding a poster that says, “disability rights are women’s rights are human rights.” So using that as a springboard, can you just describe the scope of your activism?
Emily: Yeah, absolutely. So that poster was actually what I made for the Women’s March. My activism and the work that I do is personal, its political, its professional, and spans pretty much all areas of my life. I specifically prioritize talking to people about disability in a way that makes it understandable and relatable and is not alienating. I’m all about having open dialogues and really meeting people where they’re at. Part of that is being willing to take the time to talk about my experiences- to ask people to recognize that disability does not make me any less worthy, or any less whole, or any less human. A big aspect of getting people to understand that is representation. So if we don’t work towards more authentic and positive representation of disability in the media, then people don’t have those positive messages reflected back at them. I think that’s a huge part of what inspires my activism- is getting those positive portrayals and those honest thoughts out there in the world.
HeartShare NY: Absolutely. Can you share, I came across it on your website, but can you share what your first experience in the media was and that’s how your activism started?
Emily: Absolutely. So my story is a bit of a unique one. I actually had the opportunity to appear on Sesame Street when I was just 10 years old. I was on for a season, and I essentially played myself. The goal of my character was to educate kids about my life with a physical disability. So if that’s not a springboard for media-focused disability activism, I don’t know what is.
HeartShare NY: Absolutely. Can you go a little bit more in detail about the challenges that you face promoting disability, representation of disability in the media? Because I know from my personal experience in just trying to share the stories of our nonprofit and the people that we work with it’s, unfortunately, not usually of interest to mainstream media publications, websites. How are you trying to fix that?
Emily: I think the major issues that the disability community as a whole faces, is that the media is only interested in our stories if they are inspirational or if they evoke pity. There’s rare leanness in between of representing people with disabilities as just regular old people. We’re either put up on a pedestal, or we’re the saddest thing that anyone has ever seen. I’m trying to strike this balance where yes, we can celebrate the accomplishments of people with disabilities and yes, you can recognize the difficulties that we encounter, but we’re not used as objects when we’re portrayed in the media. It’s really about making sure that any representation is truly authentic- that it’s not just about exploiting people for the sake of evoking a particular emotion, and that can be hard. Especially when it comes to things like the nonprofit field. Of course, you want to evoke emotion in people and motivate them to support the causes, but at the same time, you also want to make sure that people are interested in the human aspect of things. So I work to strike that balance, but sometimes I encounter people who may say that I’m bitter or people who may say that what I’m talking about has no merit. You come up against a lot of people who just really don’t understand the disability experience, and of course not because that’s not something that they’ve encountered personally. That’s where the little motto that I have if you will, “making the disability experience accessible to the world,” really comes into play.
HeartShare NY: In what ways have you made it more accessible? I know that you write about a variety of topics but can you describe to our listeners how you’ve tried to make your experiences accessible?
Emily: I hear a lot of storytelling. So I think that the way you really invite people in is by telling stories. I do that both personally, and I also do that by supporting other people to tell their stories. I am the Editor-in-Chief of the Rooted in Rights blog, and Rooted in Rights is a media platform that provides an avenue for people to identify as having disabilities to share their stories- whether its a blog post, or creating a video- but it’s really all about telling your story and representing yourself authentically, and inviting people in rather than pushing them away. That’s always been one important part of my work- is not just talking at people, but telling the story.
HeartShare NY: Certainly. You do that very vividly in describing different avenues of your life where you face challenges, and you just hit a wall because people are thinking very narrowly about things.
Emily: It happens a lot, unfortunately, but I believe that if you change the mind of one person, then you’re still accomplishing something.
HeartShare NY: I agree with that. I really do. So you’ve talked a little bit about how media mainstream media coverage can improve by having more representation, accurate representation, portrayals that are not pitying the character and what not. What can consumers do to help shape this landscape? What would a listener be able to do to change this representation?
Emily: I think the most important thing to do is to be very conscious of the media that you’re both consuming, and sharing with other people. It’s very easy to click share on stories that made you feel warm and fuzzy, or a story that made you think, “Well gee, I’m so glad my life is not like that,” but be conscious about what you’re sharing. Is the information that you’re sharing something that’s really going to make a difference in the way that people look at disability, think about disability, perhaps support disability-related causes? It’s really about being a conscious and thoughtful consumer of media. I know it’s challenging in the media landscape to know, “what should I share, what should I not share,” but I always say that a good marker of something that is worth sharing is often something where people with disabilities have been consulted. They’re sharing their insights. They’re not just sort of there in a symbolic way, but it’s something that really, clearly engaged someone with a disability in the creation of that media.
HeartShare NY: Yeah, and so that being said, would you have any recommendations on where to go to find those authentic disability experiences? So there’s your blog, there’s Rooted in Rights, I know of The Mighty- I go there often. Do you have any other recommendations on where people can read about authentic disability experiences?
Emily: Well, of course I’m biased and will say Rooted in Rights is a great place to go to. Especially because our priority is that only people who identify as having disabilities are sharing their stories. So it’s authentic. It’s right from the mouths of the people who are directly impacted by their own experiences. That’s something that’s really, really valuable for us, but I think the other thing too, is to seek out other people’s writings, and blog posts, and articles. Things that are written by people who identify as having disabilities. It’s pretty easy to find that once you get looking. It opens up a whole world and you find one blog, and then another blog. I think that blogs are one of the best existing, sort of grasping forms of activism, and storytelling, and things like that. There’s really a whole world out there and if you find one blog, you’ll be able to find another blog. On top of that, you expand your worldview, and actually talking to and communicating with people with disabilities. We’re the world’s largest minority. It’s not hard to find meaningful and authentic ways to engage and hear our stories. Of course you don’t just want to come up to someone on the street and say, “What’s wrong with you?” But having a meaningful conversation is really, really important. I think that the best way that people can find the stories that will truly inform them of the disability experience is, to use a cliche or a saying, right from the horse’s mouth. That’s where you want to find it.
HeartShare NY: I think that’s wonderful advice and maybe the typical person who might consume whatever the mainstream headlines are, or maybe just going their social media newsfeed, just trying to make more of an effort to look a little bit more deeply for a different perspective.
Emily: Yeah. You know where to look. I know it’s hard to get started sometimes, but Facebook, and Twitter, and Instagram are just brimming and overflowing with disabled people who are sharing their stories, and are putting themselves out there, and giving insight into our lives. So you don’t have to look too hard, you just have to begin looking.
HeartShare NY: Certainly. July is Disability Pride Month, and so while we celebrate how far we’ve come I wanted to ask in your opinion, what work do we still need to do in Disability Rights? If you could maybe highlight two or three main areas that just really need the most work.
Emily: Absolutely. I think that when you think about the fact that July 26th is going to be the 28th anniversary of the Americans with Disabilities Act this year, I reflect on the fact that we have come so far in terms of creating access, but I think that a major area that we still need to work on is fighting against stigma. I mean you can provide a ramp to a building but if you haven’t changed the attitudes of the people in the building, have you really created true access? That’s the question that I always ask myself. Then of course, we do actually have to focus on accessibility because sometimes we can’t even get into buildings regardless of a person’s attitude. That becomes a problem whether it’s a staircase that’s blocking access, or whether we’re talking about technology accessibility and we’re talking about images that don’t have descriptions for people who are blind or visually impaired, we’re talking about videos that don’t have captions for people who are deaf or hard of hearing. It just becomes these little things that most people who aren’t disabled take for granted- that we’re still fighting for even 28 years after the passage of the ADA. So I think we have to focus both on the physical access, and the social access. Those are tall orders, but my hope is that we’ll keep moving in the right direction.
HeartShare NY: Absolutely. I mean I’m always surprised whenever I find out that so many different companies or buildings are just, in general, there’s not a lot of ADA compliance after all of these years. A lot of the time there needs to be a lawsuit to actually get compliance.
Emily: Right. Unfortunately, yeah.
HeartShare NY: It seems like you are out in the community a lot. If someone wants to reach you or wants to join your efforts, how can they do that?
Emily: Well in terms of finding me personally, I would say that Twitter is always the way to go. I’m just @emily_ladau on Twitter. That’s usually a really quick and easy way to get in touch with me. Then if people are looking to engage more on a professional level, especially disabled people who are interested in sharing their stories, I really encourage them to reach out to me. We are Rooted in Rights, you just go to rootedinrights.org and look at the information there about how you can pitch ideas to the blog if that’s something that you’re interested in doing. I’m always looking for new voices and new people to support, and really shaping their stories and getting them out there in the world. So yeah, Twitter and Rooted in Rights are two really good ways to get a hold of me.
HeartShare NY: Wonderful, and thank you for encouraging that. I’m sure that people will feel more open to sharing, hearing that from someone like you.
Emily: I hope so, yeah.
HeartShare NY: I think so. We’re gonna put it all on social media, and hope that more people see and hear about what you’re doing.