Demystifying Disability with Emily Ladau

Emily Ladau is a passionate disability rights activist, writer, storyteller, digital communications consultant, and author of Demystifying Disability.

Transcript

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Marsh Naidoo: Hi guys, welcome to the Raising Kellan Podcast. My name is Marsh Naidoo, and I blog at RaisingKellan.org, where we curate resources for parents raising children with developmental delays and/or disabilities. For those of you who are new to us, welcome. This podcast and blog started off as a passion project in 2019. As a mom and a physical therapist, I wanted to share the resources that I found beneficial in raising my son Kellan. As always, remember the information provided here is purely educational. And if you are seeking advice for your specific situation, to always contact a trained professional.

In today's episode, number 71, we chat with Emily Ladau, who is an internationally-recognized disability activist, speaker, as well as author. So get that cup of coffee, put your feet up, and get ready for some awesome conversation.

Marsh: Emily Ladau, welcome to the Raising Kellan Podcast. We are so pleased to have you here with us today.

Emily Ladau: Thank you.

Marsh: Guys, Emily has written an absolutely amazing book called "Demystifying Disability: What to Know, What to Say, and How to be an Ally."

Emily, before we start talking about the book, can you please share something about yourself with us?

Emily: Sure, I'd be happy to. So again, I'm Emily Ladau, I am a disability rights activist, a writer, a speaker, and a communicator. I like to joke that I am a professional disabled person. I'm disabled 24/7, both because it's part of my identity and who I am, but it's also very much part of my culture. And it informs all of the work that I do. I was born with a physical disability called Larsen Syndrome, which is a genetic joint and muscle disorder. And my mother and her younger brother (my uncle) have the same disability. So disability is very much a part of my life and my DNA but it's also very much a part of the narrative that I share with the world. And I'm very passionate about educating people about disabilities. And so that is what has led to the line of work that I'm currently in.

Marsh: Emily for our parents out there, how would you define disability? And then, can you please tell us, in your experience and in your opinion, the difference between disability and ableism?

Emily: Yes, so I define disability simply as a natural part of the human experience.

But certainly, that is not the legal definition nor the only definition of disability.

There's such a breadth and depth of ways to describe disability because there are more than 1 billion disabled people around the world. And so that means that you're going to get 1 billion-plus opinions and experiences and stories. There is no singular experience or definition of disability. And in regard to ableism, I define that pretty straightforwardly as attitudes and actions and circumstances that really devalue people on the basis of disability, whether they have a disability or they're perceived as having a disability. And ableism is incredibly pervasive in our thinking. We are socialized to think of disability as shameful, as negative, as a bad thing. And so we're afraid to sometimes even say the word disability. But when I remind people that it is a natural part of the human experience, my hope is that we can move beyond these notions of negativity that we hold. And in doing that, we'll begin to move away from the ablest attitudes that we hold and the ablest actions that we do.

Marsh: As far as the language of disability is concerned, and to be honest, in my experience, especially when Kellan was younger, using the term special needs, honestly, it was what I heard so it was what I spoke. And it was how I defined my son as well as our family situation. Upon reading as well, I find that the words special needs sometimes are not favorably looked on. I just need more direction on that. What are some of the opinions you hold, as far as using the term special needs?

Emily: Language and disability can be incredibly complex because, as I was mentioning before, with more than a billion people who have disabilities, you're going to have such a range of opinions. And the language that we choose to use for identity purposes is really deeply personal. And so there's not necessarily a right answer here. That being said, first and foremost, it's most important to defer to people with disabilities whenever possible, when it comes to their preferences.

And by and large, the disability community prefers simply saying the term disability.

That being said, there are plenty of people who do prefer the terminology special needs. But what so often happens is that the term special needs are used by the parent community and by educators and the medical community. And it's not necessarily actually embraced by disabled people themselves,

but it's a title that's placed upon us. And I've often wondered why it is that my needs,

as someone with a disability, are considered special, when in fact I'm a human being

and have needs just like anybody else. So I really urge people to stay away from using terminology like special needs, especially because that's not a legal term either, right? It's not the Americans with Special Needs Act. It's not the Americans with Different Abilities Act. It's the Americans with Disabilities Act.

And when we say special needs, we're implying that there's something about a person's very human needs that make them different or other or separate. Whereas, they're just that. They're human needs. And so I really, really urge people to shift away from using that term. That being said, if somebody who has a disability

expressly tells you that they prefer the term special needs, I respect that preference.

Marsh: That was actually something that I was gonna get to, when, in your book, you do talk about don't dance around using the word disability. What do you think?

I mean, I'm stumbling myself right now. What do you think is some of the discomfort that comes from using the word disability?

Emily: I think so much of our discomfort around the term disability comes from the fact that we've been socialized to think about disability in very negative terms. So think about the media portrayals that we so often see of disability. They're either these very inspiring narratives of someone overcoming their disability, when in fact they're just a human being who has a disability and did something. Or we might see a story of someone's disability being portrayed as a tragedy. And we don't often enough see media representation of people with disabilities existing and living our lives. We don't see that some days are good and some days are bad, just like anybody else, right? There's a messiness to life, but it's not necessarily that our disability makes our life especially inspiring or tragic. That being said, those are the types of portrayals that we see, because this is the messaging that we internalize, and also because we don't talk about disability in general. It's not something that's taught in schools when we're talking about history, it's not part of the curriculum. It's considered taboo to have conversations about it. We push it very much to the wayside. And so when people openly use the term disability, I think it creates discomfort because we've not been taught that it's an identity to celebrate. We've been taught that it's something to dance around, as I said in my book, or to hide or to avoid or to just not embrace.

Marsh: Do you care if I read something from your book?

Emily: No, not at all, go for it.

Marsh: Here we go, Emily. This comes from page 113. "Kids learn what they live and they'll mimic what they experience. When adults model stigma and discrimination or shame and ignorance, they're perpetuating it into the attitudes and actions of future generations. Keep in mind that this applies to parents and caregivers of disabled kids, too." I think pretty much what you said gets conjured up in that single statement right there. Having said that, Emily, what I wanted to talk to you about was some terms that I found interesting and I would love your take on them. The first one of those is intersectionality. How does intersectionality relate to disability? 

Emily: I'm really glad we're talking about this because I think there's, first of all, a misunderstanding about what the term intersectionality really means and it can get thrown around a lot without recognizing the deeper meaning behind it. And so when I talk about intersectionality, I'm talking specifically about how multiple identities can overlap and inform how the world perceives a person and how a person experiences the world around them. And right now the term intersectionality has just come to be tossed around in much the same way that we use words like diversity and equity and inclusion, without really recognizing that there is so much weight behind a word. Because we cannot simply talk about disability without talking about all of the other identities that can overlap with disability. Disability is the only identity that can cut across any and all other identities. It can overlap with any and all other identities. And so, I am a white woman with a physical disability, which means that I experience my disability through that particular lens. Disability can also intersect with other identities, whether it is someone of color who is disabled, whether it is someone who is LGBTQIA+ who is disabled, right? Whether it is someone who is of a particular religion that's disabled. All of these combine to inform that person's life experience. And so we can never look at disability just in a bubble or a vacuum or a silo because that's not how disability works. There are many identities that makeup who a person is. 

Marsh: I loved reading about you sharing your experience growing up and the role your parents played. Can you share a little bit about that relationship?

Emily: I definitely had and continue to have a unique relationship with my mother because we share the same disability. And in that way, I'm very lucky because I had someone growing up who showed me the ropes of advocating for myself and who showed me what it was going to look like to become a disabled adult. And I'm also quite lucky because my father has always been incredibly supportive, and also in many ways taught me not to take any nonsense from anyone. So I feel quite lucky to have grown up in the family that I did, because I think that they helped shape the person that I have become. And they very much supported me as I navigated, figuring out my sense of self. And as I went on the journey of embracing my disability as part of who I am, my mom was very much on that journey with me. And I feel like that's a unique thing that not many people in the disability community have, that adult role model to go on that journey with. And I cannot stress enough the role that parents can play in supporting their child to develop a healthy and positive disability identity. 

Marsh: The other term that I wasn't quite sure about was infantilization, how would you describe that? What does this mean? 

Emily: So I think that what happens too often to people with disabilities is that, because we have a disability, we are treated as though we're children. We're treated as though we don't get to have a say in what's best for us and what's best for our lives. And I notice this, especially when it comes to people who have disabilities that may impact their cognition or their communication. There's an assumption that they should not have any kind of active role in participating in decision-making about their life. And so for me, when I'm talking about infantilization, what I'm really talking about is the way that disabled people, no matter what age they are, are treated as though they're children and as though they don't have a right to autonomy over their lives. 

Marsh: What are the major blocks right now or the major points the disability community are facing? 

Emily: I think that what we need to understand is that every issue is a disability issue because every issue impacts disabled people, whether it is access to healthcare, whether it's employment, education, transportation, voting rights, socialization, whatever the case may be. There's nothing that doesn't touch the disability community. It's not a niche community. It's 15% of the global population. And we exist in society just as everybody else, which means that every issue also impacts our lives. And so I don't think it's possible to isolate any one particular issue. Rather, I would encourage people to incorporate disability into all of the conversations that we're having, around every issue pertaining to our lives. 

Marsh: Emily, thank you so much for joining us today. Is there anything that you would like to leave us with? Any sentiment that you would like to express? Any thoughts for the listeners out there that you would like to convey? 

Emily: Well, I really appreciate this opportunity to be able to share a bit of my story and my work with you and with your listeners. And I would simply leave everyone with a call to action to continue learning about disability, to sit with the feelings of being uncomfortable. If some of the new learning makes you feel a little bit uncomfortable, sit with that, take some time to process it. Take some time to do some more reading, some more learning, engaging with the disability community. Don't be afraid to dive in. And remember that whatever point you're on in your learning journey, there's always room to keep going.

Marsh: Well, thank you, Emily. You have an amazing evening. And again, guys, Emily's book will be an amazing read. That's "Demystifying Disability: What to Know, What to Say, and How to be an Ally." Thank you, Emily. 

Emily: Thank you. 

Marsh: As always, thank you for listening along on the Raising Kellan Podcast. We sincerely appreciate your time. And if you could kindly leave us a rate and a review on your podcast player, we would appreciate that as well. Well guys, until we see you all the next time, as always, remember, get to the top of your mountain. This is Marsh Naidoo signing off.

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