Leading With Empathy & Allyship Show

Demystifying Disability With Emily Ladau

In Episode 59, Emily Ladau, Disability Rights Activist, Author, and Communications Consultant at Words I Wheel By, introduces the topic of disability through an insightful discussion with Melinda on systemic ableism, disability history, representation, and rights. Emily explains why it’s alright to use the term ‘disabled’, how accommodation and inclusion should be viewed upon, and how we can build allyship within the disability community.

Additional Resources

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Quotes

  • “In order to acknowledge that there’s so much diversity under one umbrella, we have to recognize that disability cuts across all identities…. When we look at it in that way, it can initially be challenging to find something that unites us but I don’t mean that in a defeatist way— rather I mean that we should be celebrating the individuality within the community and not looking at it as one monolithic block of people who all want the same things because the reality is we all want different things but what unites us if anything is the common goal of fighting for access, inclusion, justice, and rights.”
  • “I don’t want you to be afraid of the word ‘disabled’ because that’s what I am and to acknowledge that doesn’t make me less than human. If you say that I have special needs, my question for you is what makes my needs so much more special than yours?”
  • “Two of the most common [terms that are harmful or stereotypical representation of disability] that I think are important to talk about are, first of all, looking at disability through a lens of pity, seeing it very much as a story of tragedy, as a story of overcoming, as a story of someone being less than a whole and less than human because of disability. And then on a flip side of that, there’s the narrative of inspiration which is to say that disability somehow makes you a superhuman and it somehow makes you everyone else’s inspiration.”

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Guest Speakers
Headshot of Emily Ladau; a White woman who is wearing glasses and has curly brown hair pulled back halfway, with the rest framing her face. She is wearing a black dress dotted with red flowers and green leaves. She is sitting in a power wheelchair, facing the camera, and smiling. One of her hands is resting in her lap and the other hand is resting on the joystick of her wheelchair, turned so that a tattoo of a peacock feather is visible on her inner arm

Emily Ladau
Disability Rights Activist, Author, and Communications Consultant at Words I Wheel By

Emily Ladau is a passionate disability rights activist, writer, storyteller, and digital communications consultant whose career began at the age of 10 when she appeared on several episodes of Sesame Street to educate children about her life with a physical disability. She serves as the Editor in Chief of the Rooted in Rights Blog, a platform dedicated to amplifying authentic narratives on the disability experience through an intersectional lens.

Transcript

MELINDA: Welcome to Leading With Empathy & Allyship where we have deep real conversations to build empathy for one another and to take action to be more inclusive and to lead the change in our workplaces and communities.

I’m Melinda Briana Epler, Founder & CEO of Change Catalyst and author of How To Be An Ally. I’m a Diversity, Equity & Inclusion speaker, advocate and advisor.

You can learn more about my work and sign up to join us for a live recording at ally.cc.

Alright, let’s dive in.

MELINDA: Well, hello, everyone. Welcome. Today, we are talking with Emily Ladau, author of Demystifying Disability, about ableism, disability history, disability representation, and disability rights. Well, hello, Emily.

EMILY: Hi, Melinda, how are you?

MELINDA: Good. It’s good to see you again.

EMILY: Yeah, you too. I’m so excited to be on your show after so many years of watching it.

MELINDA: Oh, thanks. Well, I’m glad to have you here. So, we always start with, if you could just say a little bit about you, personally, your story and then how you came to do the work that you do.

EMILY: Sure. I guess I should start by talking a little bit about my disability. I have a physical disability called Larson Syndrome. And I am a wheelchair user. 

And so, my disability is very much a part of my life and part of my identity and who I am. It does very much define me in a lot of ways. It’s been something that’s really shaped so much of what I do and informs so much of how I perceive the world and how the world perceives me. 

I got my start in advocacy at a relatively young age, thanks to being able to watch my mom be such a great advocate. She shares the same disability that I do. And also, my dad being such a strong advocate and supporter. 

And then, at the age of 10, I actually had the opportunity to appear on several episodes of Sesame Street to educate kids about my life with a disability. I don’t think I realized it at the time because I was only ten, but in hindsight, I think that was definitely a springboard for me in terms of recognizing the power of speaking up and educating about disability. 

And so, my career trajectory ever since then has really been focused on advocacy and activism and led me to where I am and the work that I do today.

MELINDA: So, why did you write the book? What prompted you to write this book at this moment?

EMILY: So, I think for me, everything that I have worked on to this point has been focused on making the disability experience more accessible to the world. When I was presented with the opportunity to write Demystifying Disability, my initial question was, “Why me? Why should I be the one to write this?” 

But I realized that there was such a gap in the market for a basic primer on disability. There’s so much out there about disability. There’s a really robust world of disability media, but it can be really confusing to know where to start with all of that information. And so, I wanted to offer people a starting point, a primer, a place to go to get some questions answered in what feels like a safe and non-judgmental space. 

And so, that’s where the idea for Demystifying Disability came from. It was my way of offering to meet people where they’re at when it comes to talking about disability because right now, I don’t think we’re having enough conversations about disability. 

I do believe that part of that is because there’s a lot of uncertainty around how to talk about disability and how to think about disability. And so, by creating this reference, if you will, I hope that I’m offering people an opening to be part of those dialogues while also giving the caveat that I am one person. 

I’m a White, physically disabled woman. I am heterosexual, and I am cisgender. Meaning that I identify as the gender that I was assigned at birth. And so, even though I come to this work as a marginalized person, I also come to it as a privileged person. 

I never want anybody to think that Demystifying Disability is meant to be the definitive guide on disability because it’s not in any way. It’s one person’s attempt at creating an opening for people to join the conversation.

MELINDA: Awesome. Awesome. So, we’ve talked with several people with disabilities over the last 60 episodes of Leading With Empathy & Allyship. People with intersectional identities. Tiffany Yu, KR Liu, Sam Sepah, Victor Calise. And then, we also talked with Dr. Jessi Gold and Dr. Ayana Jordan about mental health as well. 

There’s so much that we hold under the umbrella of disability. Such a wide diversity of disabilities. Look across intersectional identities and also different distinctive disabilities within that umbrella. So first, I guess, why don’t we talk about what unites people with disabilities? What is that bigger term people, people with disabilities, or disabled mean?

EMILY: I think it’s really important to understand that, although so many of us use disability community as a collective term, it’s very challenging to ascribe any kind of collective term to disabled people because there’s 1.3 billion of us around the world who needs to grow as a population. 

We are the world’s largest minority and a group that anybody can join at any time. And so, to use a word like disability, or to use a phrase like disability community as an umbrella, poses its own set of challenges because I always say, and so many other people in the disability community say that if you’ve met one disabled person, then you’ve met one disabled person. By no means does that make that person or you now an expert on the disability experience. 

And so, in order to acknowledge that there’s so much diversity under one umbrella, we have to recognize that disability cuts across all identities. It’s the only identity that can intersect with any and all other identities. And so, when we look at it in that way, I think it can initially be challenging to find something that unites us, but I don’t mean that in a defeatist way. Rather, I mean that we should be celebrating individuality within the community and not looking at it as one monolithic block of people who all want the same things because the reality is that we all want different things. But what unites us, if anything, is the common goal of fighting for access and inclusion and justice and rights. Those are things that people have still not been afforded, but to different degrees, right. 

As I was talking about before, I came to this conversation with a lot of privilege. And so, in many ways, there are rights that I enjoy that people with other types of disabilities, that people who are disabled and have multiple other marginalized identities don’t enjoy and don’t get to experience. And so, I think as much as the fight for rights and justice unites us, we also have to acknowledge that we are at very different points on our individual journeys.

MELINDA: How do we hold intersectionality within the disability community and really, within this disability activism in particular, and kind of pushing for better equity and inclusion for people with disabilities, so that people are really able to thrive and shine on their own terms with their unique identities. 

When you envision a disabled person, I think that the way our society is constructed, most people envision somebody in a wheelchair. Right? And the signage is telling us that, right? When we see disability signage, that is what we’re seeing. Or accessibility signage, as well. So anyway, how do we really hold intersectionality better when we’re doing this work?

EMILY: I think that in so many ways, I am the embodiment of what a lot of people picture when they think of disability. Although, even I am someone who feels like I don’t really see myself represented. I think there’s a very specific type of disability that we tend to see. Sort of the White, conventionally attractive wheelchair user is the common archetype if you will. 

So, I feel that I definitely match the understanding that people have in some ways, but perhaps not entirely. That being said, I think we fall into the trap of understanding disability only as what we can see is what we can process. 

We automatically assume that by looking at a wheelchair, by seeing a person using a white cane, by seeing somebody using sign language, or by seeing someone who walks in the gate that’s different than ours. Oh, that to us means disability. But we don’t hold space for the fact that sometimes, disability does not look like anything. 

It can be non-apparent. It can be something that we don’t know about if somebody chooses not to disclose. And so, the first issue is really moving beyond that narrow scope and that narrow understanding of what disability looks like. 

And then, the second thing that we need to work on is understanding, as I mentioned before, that disability cuts across all other identities. That means the disability community, if we do indeed use that umbrella term, holds every single other identity in the world. And so, if we only understand disability through this lens of White, physically disabled people, we’re completely missing so many millions of other experiences of disability. 

And so, I think we have to hold on to the fact that different identities can connect and that different forms of oppression that we experience can intersect. And so, if we’re not holding space for that, then we’re completely ignoring the multitude of identities that exist within the community.

MELINDA: I totally agree. I think on the other end is, when we’re working on diversity, equity, and inclusion in our workplaces, often people with disabilities are left out, and people of color with disabilities, queer people with disabilities, have unique experiences with marginalization in the workplace as well. It’s so important to recognize and to design for those folks. 

How is the disability community, this broad disability community, evolving? My awareness around disability honestly is young. When we first held our Tech Inclusion Conference in 2015 is when I really had this big aha moment. “Oh, wait.” When we talk about diversity, when we talk about diversity within our communities, we’re missing people with disabilities in that conversation, and then also, of course, in the action and the systemic change needed in our workplaces. So, how is the disability community evolving?

EMILY: I think there has always been this misconception that when the Americans with Disabilities Act was passed in 1990, that that was it. Rights were given to disabled people, and we can wash our hands of it, and we’re done with that conversation. 

But what we tend to forget is that in the 31+ years that it’s been since the passage of that civil rights law, the disability community has been continuing to fight for our rights because, in a lot of ways, those rights have yet to be implemented. 

Looking back further than that, the Americans with Disabilities Act was certainly not the only law that was passed related to disability rights. It’s not as though disability activism just suddenly sprung up in the early 1990s. Right? This has been ongoing historically for decades. 

When we look at it that way, we have to understand that disability is not static, ever. It’s constantly evolving because society is constantly evolving, because more people are becoming disabled, because we’re creating new adaptations and opportunities, because we’re creating new technology, because we’re creating new advancements in science that support disabled people to have better qualities of life. 

So, first, we have to sort of look at the context surrounding disability and recognize that there’s so much going on that impacts what it’s like to live as a disabled person. And then, on top of that, we have to recognize that the internet is only relatively recent. As much as we think it’s always been a part of our lives, it’s only really factored into our work in the last couple of decades. 

And so, I am old enough to remember. I’m 30. And so, my life pre-social media, and my life post-social media, and how that very much impacted my development of a sense of disability identity. Once I really became involved with the disability community online, I was able to better understand my own identity. 

I think that our evolution has been ongoing again for years and years and years, but it’s now reaching a continued point of evolution through the use of social media and connecting online. It’s also given people a chance to organize, to shift away from the conversation of simply disability rights and towards the conversation of Disability Justice.

MELINDA: Okay. I want to get back to that in a minute. I just want to take a moment to talk about language a little bit. I talked about this with Tiffany Yu as well. If those of you who are listening want to go back to the episode, we kind of laid the foundations of this work a lot. 

Tiffany’s organization, Diversability, has an apparel line that says disability is not a bad word. You’re using disability a lot. I have found that in my work of training people around how to be better allies, that so often, people want to shy away, I will say shy away. They have a fear of saying disability, of calling somebody disabled, of using those terms to refer to somebody. 

Even when I say it’s okay to say disability. You ask, obviously, how people want to describe themselves and how they want to be described. Disability is not a bad word. Even when I say that, somebody inevitably in the chat or in that training will say, “Well, can we say differently-abled? Can we say special needs? Can we say something else?” And so, can you talk about that a bit? About language and why disability is not a bad word?

EMILY: I’m really glad you’re bringing it back to this because I think what happens is when we have conversations about disability, a lot of the major points get lost because people get stuck on that initial language framework. And so, I’m trying to talk about disability rights and Disability Justice, and somebody is saying, “Why are you using the word disabled?” And so, we have to go all the way back to the beginning. 

I think that’s because we’ve been socialized to understand disability from the viewpoint of negativity. There’s so much stigma surrounding it. There’s so much ill representation surrounding it. It’s just not, in any way, talked about positively around us when we’re growing up unless we are in a particularly progressive environment where we’re already embracing disability or surrounded by disability. 

It’s not something that’s in our curriculums in school, right. So, when we talk about disability, we have to remind ourselves so often of the fact that it can be something we can be proud of. It can be something that we can hold on to and embrace as an identity. That’s hard when you constantly have people telling you, “No, don’t call yourself disabled. I don’t see you as disabled. You’re not disabled. You’re handicapable. You’re differently-abled. You have special needs.” 

I feel when people say that they are well-meaning but also erasing a part of who I am by asking me to use a language other than how I identify. 

MELINDA: Just to interject for a second. It’s a little bit like saying, “I’m colorblind, or I don’t see color.” 

EMILY: Absolutely. Right. And so, you’re essentially saying, I only see you as human if I don’t see this part of you.

MELINDA: Right. 

EMILY: That, to me, is incredibly harmful. I don’t want you to be afraid of the word disabled because that’s what I am. And to acknowledge that doesn’t make me less than human. If you say that I have special needs, my question for you is, what makes my needs so much more special than yours? And if you say that I’m differently-abled. My question is, well, aren’t you also differently-abled? Because every human has different abilities. So, aren’t you kind of just canceling everything out? 

At this point, why not just say disabled because that’s what it is. I should give the caveat that this is very much a point of controversy, even within the disability community. Again, we talked about that being that big umbrella. But a lot of people do not agree on the nuances of language. And so, it’s not my place to tell someone else who has a disability what they should call themselves. But as a more general rule, let’s not shy away from the word disabled. Let’s use that because that’s what it is.

MELINDA: I want to get to ableism as well. I think that this is related because often when people try to use different words to describe disability, it is from an ableist perspective centered around this norm being not disabled rather than the norm being there are people with disabilities and people who don’t have disabilities, and we’re equally normal. Let’s talk about ableism. Can you define it first? And then, in more detail, what does systemic ableism look like? What is it?

EMILY: Yeah. Just to tie it into what you’re saying about how we’re all normal, I think that this concept of normalcy is deeply rooted in ableism. And so, ableism is attitudes and actions and circumstances that devalue disabled people or devalue someone based on your perception of them as being disabled. 

And so, when we talk about ableism, we have to really understand where it comes from. And it comes from the mindset that being non-disabled is the norm, is the standard. But who decided that, right? Who decided what normal looks like? 

And so, the ableist notions of what’s considered normal and acceptable are drilled into us from a young age by the people we are surrounded by, by the lack of talking about disability in our curriculum, by the media that we consume. Although all of this is definitely getting better and there’s progress being made, this is still very much a trap that we fall into. 

This is what really leads us into systemic ableism because ableism as a mindset is completely baked into all of our systems. What I remind people is that every issue is a disability issue. Every system is something that is used by and impacts disabled people. So, whether you’re talking about education, or healthcare, or employment, whether you’re talking about transportation, whether you’re talking about voting rights, whatever the case may be, these things have ableism completely baked into them because we assume that disabled people don’t need the same access that non-disabled people do to these systems, to these services. 

For example, if we talk about systemic ableism from the perspective of transportation. Many public transportation systems are not accessible to a lot of disabled people. The argument there is sometimes disabled people don’t go out in public and use our transportation systems. Well, why don’t they have? 

MELINDA: Because they can’t! 

EMILY: Right. So, there’s always this argument. It’s the same thing when you talk with someone who owns a business, and they say, “Well, disabled people don’t come to our business.” Well, why not? Because you didn’t make your business accessible. And then, on top of that, also, you’re making the assumption that disabled people are not coming because you can’t see every single disability. 

Statistically speaking, if one in four disabled people exist in this country, 100% you are serving disabled patrons, 100% disabled people are using your transportation systems, working your offices, are your students, go to your school, vote alongside you, need medical care. 

Every issue is a disability issue. But right now, the systems that we have in place don’t recognize that disabled people are participants in those systems and do everything in their power to basically shut us out of those systems.

MELINDA: Yeah, or just don’t do anything in their power too. 

EMILY: Or welcome what I’m saying.

MELINDA: Yeah, exactly. I’m always struck when I’m on the New York subway, or Bart here in San Francisco is how many times that overhead that will say, “Well, the elevator at this stop, and this stop, and this stop, are out of order.” It’s like, “What? Wait, what?” Just out of order? Well, what’s going to happen to the people that need them? 

Something that has struck me too is we talk about inclusion, and we talk about accommodation. And instead of just talking about inclusion, and how do we better include people of all backgrounds and identities, including people with disabilities, and that is something in our workplaces, where it often makes me cringe when there are accommodations statements that almost sound like, “Well, we’ll do this basic thing for you.” Rather than, “Here’s how we’re going to include you.” There are fundamentally different shifts in thinking and messaging.

EMILY: I think what is so frustrating to see happen is that a lot of companies treat accommodations as though it’s providing special treatment rather than it’s providing what an employee needs to be the most productive and effective employee that they can be. 

There needs to be this major shift in thinking and reframing around how we understand accommodations and inclusion because it’s not special treatment to create an atmosphere and an environment where everybody can do their best work. That is, in fact, what every employer should want for their employees is for them to feel supported to be the best that they can be at their job. 

Right now, I think that we mean more towards the mindset that accommodations are an undue burden, or accommodations are too expensive, or accommodations mean that someone’s getting an edge or an advantage. But that’s just not true. It just means that you’re providing what somebody needs to be themselves in the world. 

When we reframe it like that, and more importantly, when we recognize that every single person can benefit from a well-designed inclusive, and accessible space, then I think we’re moving in the right direction.

MELINDA: Absolutely. So, you have a chapter in your book on disability history. You mentioned ADA and then other key moments in history. Obviously, it didn’t start or end with the ADA. I also wrote about the ADA in my book, How To Be An Ally, because I felt like it was a really good example of what can happen over time. 

It took a long time to get there, where you have disability activists, and we also had allies that stood up at key moments to help push that legislation through civil rights activists and women’s rights activists, as well as just people that wanted to be allies for people with disabilities at that moment. 

So, maybe we could talk about, are there any other moments within disability history that are really important for people to know? I will say, while I was reading that chapter in your book, I didn’t know that it wasn’t until 2012 that Tammy Duckworth became the first visibly physically disabled woman elected to the US Senate – 2012. So, history, and that’s pretty close to the present. Lots more work that needs to be done, obviously.

EMILY: Yeah, history is always happening, especially when it comes to social justice movements. I think the most important thing I can say is that I want to stress the title of the chapter, which is that it was an incomplete overview of disability history because the reality is that I could have written volumes and volumes just on the history of disability, how we got to where we are, and how we continue to move forward. 

Even though I try to be inclusive, still limited in scope by the fact that I was trying to hit some key points. I was trying to do so quickly because I know that not everybody wants to dive deep into an academic dissection of a particular moment in history. I want to leave that to the historians. 

Even within my book, I feel now reflecting back on it so long after the writing process has ended because I finished writing it last year that there are other moments that I wish that I had included in the book. And so, rather than highlight what’s already in there, I think my goal going forward is to talk about the ways in which my discussion of disability history is very much informed and shaped by the fact that I am a White person who is physically disabled. And so that is a lot of how I understand the history that’s come before me to get me to where I am. 

For example, in the 1970s, there was a sit-in in California because a bunch of disability activists was fighting to be heard to ensure that our rights were protected. And that was sort of a precursor to all that happened around the Americans with Disabilities Act. I’m intentionally not in-depth here because I don’t think anybody needs a super in-depth history lesson, but this was called Section 504 sit-in. 

I really encourage you to read more about it. I think that what people don’t recognize is that there’s so much more to disability history than just White physically disabled people. For example, during the Section 504 Sit-in, the Black Panthers were very involved in supporting the movement. Social justice movements often interconnect and overlap with each other and support each other to move forward. And then, something that I feel that I omitted from the history section that I really want to talk about is the discussion of institutionalization. 

I did talk about the closing of the institution Willowbrook in New York State and Staten Island. But what I do wish I had talked about more was that a lot of that was due to the work of self-advocates who were fighting and fighting to get me places closed down. So, for example, a gentleman named Bernard Carabello, who was a resident of Willowbrook for years and was integral to advocating for it to shut down and for the movement of deinstitutionalization. 

And so, I say this because disability history is human history, and to encompass all of it in X number of pages in a book simply is not possible. It’s continually evolving and growing. I’m continually evolving and growing in my learning and in remembering that there are so many people who came before me who have been doing this work and so many people who will continue to do this work after me. It’s not static. It’s an ongoing movement.

MELINDA: Let’s circle back to what you talked about earlier, which is to go beyond disability rights to Disability Justice. What did you mean? What does that look like?

EMILY: I’m glad to be revisiting that. The disability rights movement is the one that I really came up in, and it’s very centered on, again, people who have certain types of disabilities, who come from certain backgrounds, who have certain identities. And so, it was always my understanding that these were the people who were centered on disability rights. 

I was the type of person who was centering on the conversation around disability rights. But the question that we need to be asking ourselves is, who’s not at the table? Who’s missing from the conversation of disability rights? And it’s those who are most marginalized among us within the disability community. 

Disability Justice is led by people of color and by queer folks who said, “No, we don’t just need disability rights, we need Disability Justice. In order to achieve Disability Justice, we need to be the ones at the center of the movement as the people who are most marginalized and impacted by so many disability issues.” 

And so, there’s been a broader call to action to move crumb rights to justice. But I don’t think that I can even fairly call myself a Disability Justice advocate because it’s not right for me to center myself in that movement. It’s for me to learn from. It’s for me to recognize that I can do better, and I can work towards Disability Justice. But I know that it’s a learning process, and it’s something that I’ve not yet achieved in my work. It’s something that I am actively working toward to be a better accomplice to disabled folks of color and queer disabled folks who are so often excluded from the mainstream conversations about disability.

MELINDA: One of the things that KR Liu talked about is that she is also White. A part of her work, she believes, is bringing people of color to the table, people with different disabilities to the table, trans people with disabilities to the table with her as an active allyship, as an act of advocacy. 

I mean, honestly, women should be doing this as well. People with underrepresented identities should be thinking about how can we be better allies for each other and go deeper into what our own biases are even within those communities and how we can do better, be better, and advocate more, be an accomplice to really change those systems for everyone’s benefit. Are there other ways that you think about allyship within the disability community?

EMILY: I think it’s so vital for us to understand that just because we are disabled does not mean that we are absolved from doing the work of being a strong ally to other disabled people. And just because we have one experience doesn’t mean that we are the expert on all other experiences of disability. 

And so, no matter what marginalization you may hold, you can still be an ally to someone else whose experiences are different than yours. This is something that I am constantly practicing and constantly working on because, as cliche as it is, allyship is very much a journey and not a destination. 

It’s not something that we can just slap a label on ourselves at the end of the day and say, “I’m an ally now because I listen to one talk with a disabled person or read one book by a disabled person.” It’s a constant and ongoing process. So, for me, allyship is something that I don’t think I will ever fully achieve. It is something that I will continue to work on and do my best.

MELINDA: Absolutely. It’s a journey, and it’s an aspiration. It’s doing the work every day as well. Part of that work is learning. Part of that work is taking action for other people. One of the things you write about in the book, and I do too, is disability in the media. 

We talked about representation matters. And yes, representation matters. And also, the stories that are told matter significantly. It is a combination of those two, and then who is representing people with disabilities within those stories as well, or disabled people, actually. The actors that are portraying disabled characters, for example. So, how does media perpetuate ableism and shape how people see disabled people?

EMILY: I think looking at media requires us to ask ourselves two key questions. First, how are the people who are being represented being represented? And then the second question is, who’s missing entirely from the representation. 

And so, it’s not enough to say that there’s an inaccurate representation or that there’s a harmful or stereotypical representation of disability because that does not dive far enough into the fact that there’s so much of disability missing entirely from media representation. 

When we think about it that way, that helps us to have a more holistic understanding of why disability as a whole is so stigmatized and stereotyped in our world. Because what we see shapes how we think, and how we think shapes what we create and then put back into the world. And so, it’s this vicious cycle that we perpetuate of pushing these stereotypes. 

There are so many, but two of the most common that I think are important to talk about are, first of all, looking at disability through a lens of pity. So, seeing it very much as a story of tragedy, as a story of overcoming, as a story of someone being less than whole and less than human because of disability. 

And then, on the flip side of that, there’s the narrative of inspiration, which is to say that disability somehow makes you a superhuman, and it somehow makes you everyone else’s inspiration. And maybe you’re just superhuman because you got out of bed in the morning. Or maybe you’re superhuman because you climbed Mount Everest. But either way, there’s this whole scale of how we look at disability from this inspiring overcoming narrative. 

I think my personal pet peeve has really always been the narrative of the disabled people are inspiring for getting out of bed in the morning because I don’t think it’s very inspiring that I got out of bed unless you happen to know me and you know that I’m not a morning person. I hate getting out of bed. It has nothing to do with my disability. I just hate mornings, in which case, then it’s pretty darn inspiring that I got up. But not inspiring that I got out of bed because I’m disabled. 

And so, I always ask people, “Do you find me inspiring? Or do you feel sad for me because of your assumptions about disability? Or have you really gotten to know me as a person?” Then it’s okay to feel a certain way. But until then, if you don’t know me, if you’re just basing your assumptions on what you see in the media, you don’t have the full picture.

MELINDA: Yeah. I’ve mentioned this before, but I think it’s worth repeating. Stella Young has a great TED Talk called “I’m not your inspiration, thank you very much.” I believe that’s what it’s called. She calls this inspiration porn. Yeah, I think we actually use this in the representation of Black people as well. Indigenous people too. And in the media, inspiration porn is that rags to riches story, overcoming poverty, overcoming disability, etc., is so damaging and hurtful and perpetuates biases and stereotypes.

EMILY: We love to objectify people for the sake of our own feelings and emotions. Unfortunately, we do it a little too well, especially when it comes to disability. And so, I will shout from the rooftops for people to watch Stella Young’s TED talk all day every day because I think it does such a great job of explaining why it’s not an exceptional thing to be of a marginalized identity. It’s part of who you are.

MELINDA: October is National Disability Employment Awareness Month. What do you wish people would become more aware of?

EMILY: The truth is that I wish people would stop being aware of me and start going well beyond the concept of awareness. I think being aware of myself in many ways makes me feel like I am a problem to be solved. It makes me feel like you have not yet moved beyond awareness to actually taking action to actually accepting me as a human being. 

And so, what I would like people to be aware of, I suppose, is my humanity. But more so than that, what I’d like people to do is move beyond this notion of us versus them that is so often perpetuated in these awareness months and in these actions that we take to show that we’re aware of disability one month out of the year.

What are you going to do on November 1st? Are you still going to remain committed to including disabled people in creating a workplace culture that’s meaningfully welcoming to the disability community? Are you going to focus on making your workplace accessible to disabled people? What about your outward-facing work? How are you going to make your products accessible to people, usable by people with disabilities? How are you showing me that you care about my community more than 31 days out of the year? That’s my question.

MELINDA: I love that. So, where can people find more about you and your book?

EMILY: You can actually go to, and I still feel very strange saying this, just EmilyLadau.com. I haven’t gotten used to yet having my name as a URL because I changed it recently. But EmilyLadau.com. And there is information about where you can buy the book. It’s available in multiple formats for accessibility purposes. You can get the hard copy. You can get the audiobook. You can get the Ebook. 

And also, on my website, I have a free plain language translation of the book available, which is intended to make it more accessible for people with cognitive disabilities and processing disabilities. So, there are lots of ways to access it. I really hope that people will engage with it, learn from it, but also know that it is just one drop in the ocean of the world of work around disability. And so, I hope that it will be only a starting point or one point on your journey. And by no means an endpoint.

MELINDA: Awesome, awesome. And this post-it note right here is a quote that I think is a good kind of summary. If there’s one sentence that could summarize what we just talked about. “We can’t talk about ableism without acknowledging that it’s often deeply interconnected with other forms of discrimination.” So, thank you, Emily. Thank you for this discussion.

EMILY: Thank you, Melinda. Thank you so much for all the work you do to push people to be better allies and to keep striving for that. I’m grateful to know you and to know that people like you are continuing to do this work.

MELINDA: Oh, thank you. That’s really good to hear. 

And listeners, my question to you after listening is, what will you do to go beyond awareness? Emily just put that out there that she wants you to go beyond awareness this month and every month. What would you do to go beyond awareness and really take action?

Alright, thanks for listening.

MELINDA: To learn more about this episode’s topic visit ally.cc

Allyship is a journey, it’s a journey of self-exploration, learning, unlearning, healing, and taking consistent action. And the more we take action, the more we grow as leaders and transform our communities. So what action will you take today?

Please share your actions and learnings with us by emailing podcast@changecatalyst.co or on social media because we’d love to hear from you.

And thank you for listening. Please subscribe to the podcast and the YouTube channel and share this. Let’s keep building allies around the world.

Leading with Empathy & Allyship is an original show by Change Catalyst where we build inclusive innovation through training, consulting and events.

Appreciate you listening to our show and taking action as an ally.

See you next week.

About the Host

Host: Melinda Briana Epler

Melinda Briana Epler has over 25 years of experience developing business innovation and inclusion strategies for startups, Fortune 500 companies, and global NGOs.

As CEO of Change Catalyst, Melinda currently works with the tech industry to solve diversity and inclusion together. Using her background in storytelling and large-scale culture change, she is a strategic advisor for tech companies, tech hubs, and governments around the world. She co-leads a series of global solutions-focused conferences called Tech Inclusion, where she has partnered with over 450 tech companies and community organizations and hosted 43 solutions-focused diversity and inclusion events around the world.

Previously, Melinda was a Marketing and Culture Executive and award-winning documentary filmmaker – her film and television work includes projects that exposed the AIDS crisis in South Africa, explored women’s rights in Turkey, and prepared communities for the effects of climate change. She has worked on several television shows, including NBC’s The West Wing.

Melinda is a TED speaker. She speaks, mentors and writes about diversity and inclusion in tech, allyship, social entrepreneurship, underrepresented entrepreneurs and investing. She has spoken on hundreds of stages around the world, including SXSW, Grace Hopper, Wisdom 2.0, the World Bank, Obama White House, Clinton Foundation, Black Enterprise, Google, Indeed, Capital One and McKinsey.

Watch Melinda’s TED Talk

Speaking Engagements

Change Catalyst Co-Founder Melinda Briana Epler has spoken across the globe in hundreds of venues and virtual events. Empathy, Allyship, Advocacy, Microaggressions, Inclusive Leadership, and Building Inclusive Teams are just some of the topics Melinda has spoken on. Let us know about your next speaking engagement needs! Melinda has also spoken on how to build organizational capacity to advance diversity, equity, and inclusion, such as how to lead behavior change or how to build allies and advocates.

Testimonials

This show has given me clear opportunities to learn in the midst of 2020’s numerous social and personal challenges, including engaging remote content. I’ve learned new terms, heard new voices, diversified my interests and internalized personal narratives that have inspired me to get more active.

The show shaped my scope of reasoning on the dynamics in the corporate world, brand building, harmony across board with team mates. Your series has helped me feel less alone and less daunted by the challenges I face as a leader at a company that is used to moving fast with decisions and making swift progress across the board. I so earnestly want to grow and deepen my perspective when it comes to diversity and allyship; it’s not always clear how to do it. This series has felt like a path I can follow and revisit and draw strength and insight from. Thank you.

I watched many of your live shows in 2020, and I learned something from every discussion. They were inspiring on many levels. Early on during the pandemic (especially), the show also provided me with a sense of community that I was sorely needing. Thank you.

Virtual Training, Consulting & Coaching Solutions
If you’re looking for a way for remote teams to continue their learning and professional development, we’re now offering virtual allyship, inclusion and leadership trainings. We’ve also continued our consulting practice virtually. AND we now offer hourly coaching. Let us know if you’re interested in learning more!
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