Disability Rights Activist, Emily Ladau joins us to talk about self-advocacy, sibling support and her book, Demystifying Disability: What to Know, What to Say, and How to be an Ally.
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Disability Rights Activist, Emily Ladau joins us to talk about self-advocacy, sibling support and her book, Demystifying Disability: What to Know, What to Say, and How to be an Ally.
Transcript of this episode
Resources discussed in this episode:
Give us your feedback! Tell us what you think of the SLN Podcast so far.
Quotes from this episode:
In this episode:
Welcome to the sibling Leadership Network podcast. The sibling Leadership Network is a national nonprofit whose mission is to provide siblings of individuals with disabilities the information support and tools to advocate with their brothers and sisters and to promote the issues important to us and our entire families. Thank you for joining us for another episode of the SLN Podcast. I'm very excited to welcome today's guest, Emily Ladau, Disability Rights activist, communications consultant and author of demystifying disability, what to know what to say and how to be an ally. Emily, thank you so much for joining us today.
Emily Ladau:Thank you so much for having me. I'm excited.
Chris Berstler:I'm excited to I think I'm on my third time reading the book. I really love it. I should say listening to the book. I'm listening to the audio books.
Emily Ladau:Oh, so you have heard a lot of me already.
Chris Berstler:Yes, I love it. So I just want to start things off by asking you to just please tell us about yourself, your activism, your new book, and the road that led you to where you are now.
Emily Ladau:Yeah, absolutely. So again, I'm Emily Ladau, I am a disability rights activist. I'm a Communications Consultant. I'm a writer and storyteller, Speaker podcaster, I do all of it through the lens of my passion for disability advocacy. And I am a disabled woman, I'm a wheelchair user, I was born with a physical disability called Larson syndrome. So my mother has it. And her younger brother, my uncle also has it. I try to give the caveat right up front that I only speak from my own experience, I'm certainly not an expert on any disability experience other than my own, but it is something that I am, you know, deeply, deeply invested in educating about. And so that was what led to writing demystifying disability, what to know what to say, and how to be an ally, which is my book that came out, getting close to almost a year ago as of the time of this recording. And it was really, for me a way to offer a starting point for people who want to be strong allies to the disability community, but may just not be sure where to begin, they may not feel they have the language to talk about it, they may feel afraid of making a mistake and causing more harm than good. And so my intention, and all of my work is really to meet people where they are and to create points of access to having conversations about disability. And I will also notice as a fun fact that I used to work with the sibling leadership network. So that has definitely been a part of my journey, doing communications work and creating content for the website and things like that. So this is something that I am incredibly excited to have a full circle moment, if you will now being on the podcast with you.
Chris Berstler:Absolutely. Yeah. And we are super excited about you having you on the podcast. We're all actually incredibly happy for you and your book.
Emily Ladau:Thank you.
Chris Berstler:Can you tell us a little bit about the difference between an advocate, a self advocate and an ally? And in your opinion, which do we need more of?
Emily Ladau:I think that it is vital to have all three. And I think that in terms of the difference between advocate and self advocate, that can be very dependent on how somebody wants to identify. It's true that anybody can advocate. But many people choose to identify as a self advocate, meaning that they are a person with a disability who is advocating for themselves. And that terminology came from the development of the self advocacy movement, which was really intended to put the focus back on disabled people rather than on non disabled people who were speaking on behalf of or for the disability community. It was really meant to recenter and reclaim that autonomy. And then there are certain people who prefer to identify the self advocate, as someone with a disability and then there are people who just say I'm a disability advocate and so I don't think that you know, either one is right or wrong. It's it's largely a matter of personal preference. And then, of course, there's being an ally and I all always remind people that ally is not really a title that you can just give yourself, you know, you don't put a name badge on that says, Hi, I'm an ally, or you know a gold star that says ally on it, it's really more about taking action. And it's more of a title that is given to you by a community of people who recognize that you are working alongside them that you are amplifying their voices that you are supporting and centering them and their perspectives. And the interesting thing is that anybody can be all three of these things at any time, I remind people that if you have a disability, you can still be an ally to other people, and you should be an ally to other people. And if you don't have a disability, you can advocate and support people with disabilities and ensure that they're uplifted and centered. And you could become a person with a disability, at anytime. And so there's an ebb and flow between all of these. And I think that we need more of all of them, because then that means that there are more people who are speaking up who are ensuring that the world is more accessible and inclusive. And the only thing that I caution there is, of course, we need more allies, but we need allies who are willing to do the work of centering the disability community and making sure that they are not speaking over, recognizing that mantra that informs so much of the work that the disability community does, which is nothing about us without us. Meaning that if we are having conversations, if they in any way, are related to someone who has a disability, you're related to that person's life, nothing about them, without them, nothing about us without us.
Chris Berstler:Nice, thank you so much. So why is self advocacy so important?
Emily Ladau:To be a self advocate is vital in any way that you communicate in any way that is accessible to you to communicate, because it means that you are putting yourself first that you are acknowledging that you are a whole human who has needs who has once that you are worthy of respect. And I know that self advocacy can feel overwhelming, sometimes it can feel scary, it can feel like perhaps no one is going to listen or be receptive to what you have to say. But if you find your circle of support, if you find the people who will be there for you to uplift you as you are advocating for yourself, to help you practice to help you express yourself and to convey your needs. I think that you can be a really successful self advocate. And that is perhaps the most important thing is to know that you have a right to speak up for yourself.
Chris Berstler:What are some ways that siblings can help support each other in advocacy?
Emily Ladau:I think that siblings can really not only create support networks for each other, much like sibling Leadership Network already facilitates in so many ways. But they can also share resources and experiences and talk about some of the harder and messier parts of navigating life. And there's so much value in that. But I also think that siblings can play a role too, in checking other siblings who may be overstepping who may be, you know, going about something in a way that could potentially be harmful. And I recognize that every person has a different experience, that there's context that there's so much that goes on, you know, behind the scenes in every person's life. I really understand that. But I think that siblings can be accountability partners for each other in the world of advocacy as well. And they can say, hey, you know, with all due respect, it may seem like you're overstepping a little bit, you know, let's make sure that we're supporting self determination. Let's make sure that we are making the voices of the disability community heard, let's make sure that we are sharing resources that are helpful and not harmful, right. So I think that there's a real accountability network not just a support network, but any accountability network that siblings can create amongst themselves.
Chris Berstler:How can different intersections of identity influence a self advocates advocacy journey?
Emily Ladau:I like to remind people that disability cuts across any and all other identities. And so disability doesn't exist in a vacuum. And no person is just disabled, there are so many other identities that connect and overlap and intertwine. And not only that, but there are more than a billion disabled people in the world. And so that means there are more than a billion different ideas and experiences and opinions when it comes to disability. And that means that when we are talking about disability, we can't simply look at it as one isolated identity. And because if you are a disabled person of color, your experiences are going to be different than that of, for example, me who is a white disabled woman. And if you identify as LGBTQIA+, and you are disabled, that's also going to impact your experiences, it's going to impact how you navigate the world, it's going to impact whether or not people are particularly exclusionary or discriminatory in different ways towards you. There are so many factors that influence how the world interacts with us and how we interact with the world. And so when we begin to recognize that disability doesn't just exist in a bubble, but that it's part of the broader fabric of all of the identities that make up our society, it can create different pathways for people in terms of how they may need to navigate advocating for themselves in terms of how people may receive them advocating for themselves. And so I hope that people will recognize that disability is not by any means and isolate that identity, but it also is very much its own identity with a history with a culture. And that deeply intertwines and overlaps with so much else that makes a person who they are.
Chris Berstler:How has the COVID 19 pandemic changed the self advocacy landscape, and how our self advocates overcoming related challenges?
Emily Ladau:I want to start by giving the caveat that a lot of the conversation that I have heard around self advocacy and autonomy and the pandemic is connected to the experiences of people who have intellectual and developmental disabilities, which is not something that I experienced in terms of having a cognitive disability, although I do have a developmental disability, but I really wanted to talk about the tenuous relationship between navigating the fact that the pandemic has created all kinds of safety issues and requirements for people that so many have argued is about taking our rights away is about removing personal freedoms. And while I don't believe that is at all true, as somebody who has a disability who is high risk, who absolutely believes that, you know, locking down was the right thing to do at the time that mask mandates is the right thing to do. That vaccination is the right thing to do to ensure safety. There also needs to be open communication about the fact that none of this is about taking agency or autonomy, or self determination, away from people with disabilities who are in so many cases are so used to having so many things imposed on them. And on top of that, they're also experiencing, especially right now, a world in which their lives are continually being devalued. Our lives are continually being devalued by medical professionals saying, we're not going to provide treatment for you based on a quality of life, we are not going to offer the same services to you as we would offer to someone who doesn't have a disability based on a judgment that we would make about your quality of life as someone with a disability. And so it's this strange tug of war that we experience as a disability community where our lives are devalued. And yet we're being told this is for your own good. And so I think that there needs to be really strong accessible communication to members of the disability community, about the implications of the pandemic and about the fact that it's not about taking away rights to agency to autonomy to self determination, minutes about ensuring that everyone is safe, that everyone is doing what is right and what is best for them. And also, I know this is challenging, but I am a big believer in dignity of risk, meaning that everybody has the right to try. Everybody has the right to fail. That means someone with a disability has just as have a right, if they're doing something that is technically a risky behavior, if they're putting themselves at risk for COVID, I understand that our inclination is to say, Oh, my goodness, no, you need to stay inside, you know, we're protecting you, it's for your own good. And I realize what I'm saying is controversial here. But I also believe it's important for disabled people to be the ones making the decisions for themselves saying, This is what I want to do. This is how I want to live my life, that doesn't mean that they can't engage with their circle of support, that doesn't mean that your circle of support shouldn't be advising you to stay as safe as humanly possible. But when you live a life where you are already so often told what you can and cannot do, and how you can and cannot be in your body, there needs to be ongoing and open communication, about making smart choices about the fact that you still have the power to make decisions for yourself. And I can hear people already just being like what and you know, turning off this podcast, but I think this is a really interesting dynamic that we need to talk about, because it's a shifting, continually shifting landscape that we live in. And it requires really open and thoughtful and honest communication.
Chris Berstler:What are some other current major challenges that self advocates face? And how can we support change in these areas?
Emily Ladau:We are living in times that are constantly in flux. Everything is changing around us, whether it is legislation, whether it is the climate, whether it is how we engage with education, and employment and socialization. And so all of these factors build on each other, when it comes to how we all navigate the world, whether we are disabled or not. And my hope is that siblings will take the time to really support their siblings with disabilities to say, hey, there is so much going on in the world, right now let's talk about it. Let's process that together. I think that some of the biggest challenges that I know that I face so someone with a disability is honestly waking up every morning and not knowing, you know, where am I right stand as a human being sometimes. And that can be a really, really scary thing. And so having people in my life, who I can talk through that with who I can process my feelings with is incredibly important. And I think that is the challenge that every advocate is facing right now is Where do I stand in the larger world? And how do I in this world where my rights are already in such a tenuous position, advocate for myself for my wants for my needs. And so supporting change in these areas really comes from taking the time to process together and taking the time to make the issue accessible to everyone taking the time to have sometimes difficult conversations about what's going on?
Chris Berstler:Are there any resources that you can recommend for any new and or seasoned self advocates that are listening right now?
Emily Ladau:Absolutely, I am such a big fan of engaging with the disability community on social media. I think that there are so many incredible accounts run by disabled people who are doing the work and the labor of educating and sharing their own personal experiences. And so getting their authentic perspectives and their takes and their opinions on what is going on in the world, and on what it's like to exist in their minds and their body was a really powerful thing. And I'm more than happy to share some recommendations of accounts to check out but both self advocates and siblings would benefit from learning from
Chris Berstler:Yeah, yes, please. That would be awesome. Thank you. As an advocate, what is your dream for the future?
Emily Ladau:My dream is to put myself out of business and for all disability advocates to put ourselves out of business because we live in a world that is already accessible to us and inclusive. I feel like I have a little bit of job security for a little while. But I think that's okay, because I know that we're all learning and we're trying to make as much progress as possible. But my ideal future would be one in which my career trajectory was entirely different simply because we already understood that disability is just another part of the human experience.
Chris Berstler:Do you have any parting words of encouragement for current self advocates, and or their siblings?
Emily Ladau:Yes, keep learning, keep learning and do it together, grow together, learn together and know that as cliche as it sounds, even when the going gets tough, but you do have each other to navigate that. And that is a really powerful thing.
Chris Berstler:Thank you so much for being with us today. I really appreciated your time, your advice, and just sharing your whole experience with us. I really appreciate it. Thank you so much, Emily.
Emily Ladau:Thank you for having me.
Chris Berstler:So anyone listening any resources that Emily shared today or mentioned will be in the description. Make sure to also check out our COVID-19 Resources Center to get any information on getting back out there safely with your sibling. Thank you. Find resources, tools and information about the sibling experience on sibling leadership.org. The sibling Leadership Network is a nonprofit and we rely on support from our audience. Find the donation button on our homepage and contribute to the ever growing sibling movement.