Ep. 85: Should A Child’s Disability be Part of Their Parent’s Identity? w/ Author Emily Ladau and Amanda Griffith-Atkins, LMFT

 

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Summary

Like most other parents, my sense of identity forever changed with the arrival of my disabled child. And in many ways, it’s helped me to embrace (at least on good days!) a lifestyle I used to resent.

But I’ve noticed a pushback from the disability community in claiming our child’s disabilities as part of our own identities. So, of course, we had to examine this controversial and intimate topic with the best of the best.

In this conversation with famed disability activist, speaker, and author of Demystifying Disability, Emily Ladau and Amanda Griffith-Atkins guest from Ep. 81 and mom to a disabled teen, we tackle questions like: Is it ok for us as parents to find identity in our children’s disabilities? If so, where is the line? IS there a line? How can I respect both my child’s lived experience and my own? Can I share those experiences on social media? How can parents and disabled people soften towards each other and put down the proverbial weapons?

Episode Transcript

Emily Ladau  0:00 

There are parents whose full identity is wrapped up around being the parent of a child with a disability but they don't recognize that that's a separate identity compared to having a disability.

 

Amanda Griffith-Atkins  0:15 

It's so complicated because it feels like it's embedded in our identity but the way that it's embedded in my son's identity is so different.

 

Madeline Cheney  0:25 

Hello, you're listening to the Rare Life. I'm your host Madeline Cheney. Today I am honored to give you episode 85 with disability activist and author of the well-known book, Demystifying Disability, Emily Ladau, and Amanda Griffith-Atkins, the well-loved medical mama and therapist that was the guest in episode 81 about health anxiety. Yes, what a dynamic couple of guests. The title of this episode is a question. 'Should a child's disability be part of their parents identity?' This question guided our conversation. This is a controversial topic to explore but it is so needed, and it may be audacious to say, but I hope this conversation serves as a bit of a softening of the defensiveness between disabled people and parents, as I talked about in episode 77, titled, "To Those Who Cannot Say, 'I Wouldn't Have Them Any Other Way'". There's a link in the show notes if you haven't heard that one yet. My son's disability is definitely the hardest for me when it causes him suffering or pain, as I'm sure is the case for each of you listening. Because his health has stabilized so much in the last couple of years, the current hardest thing is ensuring that he wears his eye patch each day, as recommended by his ophthalmologist. He's sad, he says he doesn't want to, but he does comply. Eye-patch time is hard for him, it's hard for me, but one thing that has made it just a little easier and sweeter, is using See Worthy Disposable Eye Patches, the generous sponsor of this episode. The eye patches and port patches were created by a mom who patched her own child and her experience shows in the design. They stick just the right amount, they stay on while they're supposed to, but they do come off easily when time's up, and, to our delight, the patterns are super fun. A few of our favorite patterns are the popcorn-covered ones, the mermaids, and the ones with airplanes because Kimball pretends that they are Buzz Lightyear from Toy Story, which is super cute. So, if you are a fellow patching parent, first of all I feel you, and second of all, go check them out by going to worthybrands.com or by clicking the link in the show notes. A huge thank you to Worthy Brands for making this important episode possible. Okay, so in this episode, Amanda, Emily and I discuss questions like, 'Is it okay for us, as parents, to find identity in our children's disabilities? If so, where is the line? Is there a line? How can I respect my child's lived experience as well as my own? Can I share those experiences on social media?' 'How can parents and disabled people soften towards each other and put down the proverbial weapons?' This episode was originally planned to be a solo episode but I realized that it's such a broad and important topic and I needed to bring in some outside perspective to the table, in the form of Emily and Amanda. I just want to shout from the rooftops that this conversation is just that. It's a conversation between three women with unique perspectives and opinions and we do not pretend to represent either parents as a whole or disabled people as a whole. That being said, I encourage you to soften and become open to differing opinions and become willing to consider the perspectives shared. We're all learning. We all have things we can improve. No one is perfect. So please, please, please do not beat yourself up for being human. Alright, let me tell you a bit more about our stellar guests and then we'll get to the episode. Amanda Griffith-Atkins is a practicing Licensed Marriage and Family Therapist living in Chicago with her husband and three sons, one of which has Prader Willi syndrome. As I mentioned, she was the guest in Episode 81, which I'll link in the show notes because you need to catch it if you haven't yet. It was stellar. I was grateful to include Amanda and this one is well, with her experience in parenting and her background in psychology. Amanda is a lover of dogs and live music. And our other rock star guest is Emily love Tao. And I'm sure most of you have heard of Emily. But for those of you who haven't, let me fill you in. Emily is a physically disabled wheelchair using woman. Her first experience with disability activism started at a young age of 10 when she appeared on Sesame Street, she's done many notable things, including cohosting the awesome podcast, The Accessible Stall, and authoring the incredible book demystifying disability, what to know what to say and how to be an ally. I 10 out of 10 recommend it to everyone should read it. It is an absolute must read for all parents of kids of disability in my opinion. I am a huge fan of Emily and was so so honored to have her on the show. Emily is a lover of peacocks and theater. Let's dive in. Hi, Emily, Amanda, it is so good to have you both on the show. I'm very excited for our topic today. Because as we mentioned before, this is so needed. And it may be controversial and a little bit scary to kind of breach this topic of identity of parents of children with disabilities. But again, I think it's so needed. So thank you so much both of you for being here today.

 

Emily Ladau  6:57 

I'm excited to be here!

 

Madeline Cheney  7:00 

So, I really want today's goal to be, you know, discussing the ethics and you know how healthy it might be of as parents kind of taking on some of the identity of the fact that our children have disabilities. So let's dive into that. What are your initial thoughts, and we first mentioned the topic of today's discussion.

 

Emily Ladau  7:24 

I think that there is a constant tension and division between parents of disabled kids and disabled people, especially disabled adults. And a lot of that has to do with the fact that instead of meaning in the middle, we do a lot of talking over one another. And we often don't really take the time to have more nuanced in depth conversations beyond taking shots at each other on social media. And so I think that there's a lot that needs to be unpacked around how we can navigate the fact that disability itself is very much a culture and a history and an identity and that parents and caregivers absolutely have a place and a role in that. And do that while also honoring the fact that the experience of having a disability is different than the experience of being a caretaker of someone with a disability. So there's a lot to balance when it comes to having this conversation. But I think that rather than having these conversation, advocates and parents often just come from a place of defensiveness. So my hope is that today we can back away from those feelings and just really have a more open and honest conversation about what meeting in the middle really looks like.

 

Amanda Griffith-Atkins  9:08 

Yeah, I love what you said, I think you're so spot on. And I think as parents, you know, for me personally, I can say, I definitely realize now at the age of 39, and the mom of an almost 13-year-old of how ableism has been embedded in my sense of self right. I was never even touched by disability until I had my son like that's privileged. That's ableism right. And so I think, now I'm unpacking that and realizing disability has changed my life, but not in the way it's changed my son's life. Right? And so I'm learning how do I parent him in a way that's empowering and encouraging but also acknowledging the privilege that I have the privilege that continue to have and then someday when he's older, he may not be able to live independently. That that takes on a very different meaning for him than it does for me. So it's so complicated because it feels like it's embedded in our identity. But it's so different than the way that it's embedded in my son's identity.

 

Madeline Cheney  10:16 

Yes, I think that's so he, like, at first when I would, you know, read about different things on social media, and there would be a disabled adult saying, like, Oh, you shouldn't have identity in that. And I was like, Man, how do I figure out how I feel about this? Because I felt a little bit like, where do I fit into this puzzle, I guess, is kind of the question I had for myself. And I think the key thing I realized was that our lived experiences are very separate. And yes, they're both about disability and my experiences with my son are so intimate, and like, we're going through these different things together. But you know, I will never be able to understand what it's like for him, like, I will never understand what it's like to have his disabilities, you know, his medical complexities, what it feels like, in his body, but on the same, right, he will never understand what it feels like to be the parent, because they're just they're two very unique experiences. And so I think, realizing that and recognizing that makes a whole lot of space, it makes lots of space for all the different feelings and all the different experiences that are felt by non disabled parents of a child with a disability, disabled parents of disabled children, and of disabled people like those are all I think, separate experiences.

 

Emily Ladau  11:30 

I totally want to echo that around the fact that they are all separate experiences, but at the same time, uplift that they can converge in so many ways. And that is the challenge. I don't think we figured out how to navigate when it comes to having broader conversations about disability. And there are lines that I think get overstepped sometimes by parents and caregivers, that the disability community disabled people then use just sort of broadly paint how every single parent and caregiver must be. And that's what I noticed happening. So often, there are a few loud voices on social media of parents who assume that they know better than disabled people about what it's like to exist in a disabled body. And there are parents who full identity is wrapped up in being the parent of a child with a disability, but they don't recognize that that's a separate identity than having a disability. And so then there's those clashes that happen, where you have the few who think that they speak for, rather than with and alongside, and suddenly every parent becomes demonized, when most parents are really just trying to find a sense of community, and to understand what their role as a parent is, and the world does not make that easy to do. Because we are socialized. And, you know, Amanda, I think you were touching on this a little bit before. We don't understand disability as something that is a natural part of the human experience until suddenly, it's part of our lives. And I really feel like disabled people, disabled adults, activists do not leave room for parents to go through the process of processing, what it looks like to have disability in your life as a part of your life. And that's where the clashes really occur, because we just want the world to be less ableist right now, I want the world to be less aimless right now. But that's not going to happen until we also acknowledge that most people were socialized to be ableist in the first place. And we need to first work through those very complicated feelings. Before we can get to a point where we can have a healthy identity as someone who is a caretaker to someone with a disability. And so there's just a lot of layers here to navigating this. I mean,

 

Amanda Griffith-Atkins  14:41 

I could listen to you talk about that all day and just so appreciate your generosity in that approach. And there's something that you said that really resonated with me, which was that, you know, there are the parents out there that are causing harm in their approach. To processing and I was wondering if you would feel open to just sort of like, expressing some of your experiences with that population, the parents that are causing harm, like what have you noticed? What kinds of things are they doing? What kind of things? Are they saying? Like? What are the things that feel most harmful that parents are putting out there?

 

Emily Ladau  15:19 

I appreciate that question. Because truthfully, I never want to immediately jump to accusations of harm. But I've also come across certain very, very vocal parent advocate to pop on to posts on social media posted by disabled people to correct their language to tell them that they are, you know, talking about a specific experience incorrectly, to say that they don't know what they're talking about. And I've had that happen to me so many times. And that I think, is really painful, because I'm not asking you to use specific language, a lot of disability activists do this. So I want to make this very clear, there are a lot of disabled people who are very, very staunch about, there's one right type of language to use, I don't believe that, I think that, you know, language is deeply personal. But because language is deeply personal, when you come onto my post and tell me that I'm doing it wrong, you're basically telling me, I've been disabled in the wrong way. And that because my experiences don't align with your experiences, that I must be the one in the wrong, rather than that we're two different people with two different lived experiences. And so I struggle with that a lot. And then there are also you know, the parents who come on, and this one Carter, where they say, Hey, you know, you're verbally communicative, physically disabled person, my child is non speaking, and I have to speak for them. And you know, you don't represent me. And it's like, I don't claim to represent you, you know, but I also want to ask you very sincerely, are you claiming to represent your child? Or are you recognizing that there are multiple forms of communication? And you don't speak for the whole of your child's experience? Just because they don't communicate in the same way that I do. So those are I think the two areas where I noticed the harm happening most often is assumptions about what disabled people can and cannot do, and assumptions about how we should and should not refer to ourselves.

 

Amanda Griffith-Atkins  18:03 

Thank you. That's so helpful. And I mean, basically, what you're saying is like, we can't go in assuming, of course, this makes sense. We can't go in assuming that we're an expert on disability when we're not disabled. Right, in many ways,

 

Emily Ladau  18:19 

but neither can I, I also cannot go in and assume that I am the expert on all disabilities, because I'm disabled. So that's where I think we lose each other. Totally, you know, and I really want people to understand that. And again, like, I'm only speaking for myself here, I know that I'm not the same as every other disabled person. But that's the point, my approach to activism is different than other disabled people's. And I know that I don't speak for everyone. And I know that I can't go in and correct you about your experiences, I can talk to you, maybe about how you're presenting those experiences. You know, that's probably the third thing that I just thought of is parents who are heavy over shares, to the point where they're divulging all of their child's most complex medical info in social media posts. And I'm like, Would you do that if your child was not disabled? And would you do that? If it was you? Like, do you want a photo of yourself without clothes on social media when you're a teenager? You know, stuff like that. So but then there's the assumption that I'm correcting their experience. When actually I'm just saying, your experience is valid. Just maybe let's think about how you present it.

 

Madeline Cheney  19:50 

Yeah, I love all of the stuff. You guys have been saying. This is so awesome. I, I think that's where it really comes and I think it gets confusing for parents because we're like, oh, Where do I end? And where does my child begin sometimes. And I think that is where it's so important to remember that our identities are separate, like our identity can be, you know, informed by our lived experience of oh, I have a child with a feeding tube. So I'm, you know, maybe I don't know, what you would call this, like a feeding tube mom. So I'm, you know, I'm always bringing, you know, the feeding equipment with me. And that's a big part of my life and stuff. But then to remember the separateness of like, but I'm not the person being tube fed. So I can speak to the lived experience of, you know, being the caregiver of that, but I cannot to the person who was receiving that, and I think trying to keep those two separate, like I can talk about my lived experience all day. But I need to make sure I honor my child's lived experience, and their own autonomy of like being able to divulge what they feel like they want to divulge. And I think sometimes it's hard, and especially when the child is younger, or, you know, they may have intellectual disabilities where you might be like, Oh, well, like, I don't know, like, I feel like there's less separateness, but as my son is three, and as he's getting older, I'm feeling more and more like, Whoa, I need to like really evaluate everything I'm sharing. Because sometimes those details are part of my story, but then to be like, Hey, what are ways that I can separate the two and not have to divulge the details just to be like, kind of reference something vaguely and then talk about, okay, this is what it felt like for me. So I can still own my own experiences while respecting his privacy.

 

Emily Ladau  21:31 

And that's hard, because you are also a human being who is also in the midst of whatever's going on in your life, and you're looking for support and solidarity, and you want to talk about it. And I think coming from a place of wanting to respect to your child is the best thing you can do for yourself and your child, because down the line that will create that level of trust between you, you know, I've got your back, I'm not here just to share your personal stories on social media. And there's also a difference, I think, between looking for genuine support and solidarity. And then the parents who run a page where they're just sharing their child all the time, in any given moment, and the child becomes a persona or a brand. And you tend to forget that they're a real person also going through a very deeply human experience. And so, again, it's a lot of like gray areas for the lines. And I am very much willing to separate out people who are genuinely looking for community and people who are seeking attention. And maybe that's where I'm getting controversial here. But I do think there's a real difference.

 

Amanda Griffith-Atkins  22:58 

Totally. And I think most of our kids, well, I mean, my son, I can say at least, can't necessarily give consent on what I post, right? Like, I can't say, do you care if I post this video of you, I don't think he'll necessarily understand, you know, how many people are going to see his face and what that means. And so I think we have to ask ourselves that of like, what am I posting? Why am I posting it? And like, I mean, you use the word respect Emily, like, am I respecting his individual identity? Or is this more about me and what I want? Or is there a way that I could make this post without sharing all of the nitty gritty details and a picture? I mean, I'm curious if you guys have done this, I've seen people that have post pictures of their kids having tantrums or meltdowns. Like, why are we posting this, this is such a vulnerable moment for my child where he's super dysregulated. And the thought of like, blasting that on the internet for 1000s of people to see like, that doesn't feel beneficial. Could I just write my son had a really bad meltdown today? And I'm struggling? Does anyone have any feedback? Right, like, so I love your idea of like, being more respectful and thinking about the idea of consent and erring on the conservative side, like you know, why post it if there's any question?

 

Madeline Cheney  24:16 

Yeah, I agree with that. I think we also run into the ethics of general parenting overshare. Because that is something that is totally a thing in our society. And so I've felt myself like, oh, my gosh, wait, should I post this picture of my son playing the ukulele? It's so cute. And like this proud moment, but then to be like, Wait, is that like, is that okay? And then to be like, I feel like I think about it a lot more, because he's disabled and I might for my non disabled daughter, right? Because it's very normalized to like, just share, you know, look at this cute thing she did or look what he's, you know, did at school or whatever. So I think that's where it also gets a little bit fuzzy as like, as a parent of a child as this Sable, do I need to be more careful in sharing about their lives and even just everyday life things? Or should I just try to think of him as I would my non disabled daughter and Emily, I would be really curious to hear your thoughts on that. Because I really genuinely, that's something I grapple with, and I'm sure a lot of parents do.

 

Emily Ladau  25:19 

Yeah, so my mom jokes that if I had been born, when social media was a thing that I just would have been plastered all over the internet, from, like, the first moment that she could, you know, I never had that experience growing up, because there was no such thing as social media when I was a baby, so, but I think about it sometimes, too, you know, I hope to be a parent someday. And I think about the ethics of just taking a person, any person and putting them on the internet, before they're even old enough to have the vaguest conception of the fact that, like, you're building a public persona for them, before they even understand what it means to be a human. And so, you know, that's a whole other layer, but also for me. I love seeing pictures of people and their families and their lives. And I like when people are real on social media. So I'm perfectly happy to see an adorable photo of your son playing the ukulele. Like that would just bring me so much joy. And I think the other thing too, is, it shows just a moment in time in your life. It's not always this need to emphasize disability. And that's not erasing disability. It's just to say, This is my kid, he's disabled also be doing a thing. Look how cute he is. And sometimes it's just nice to see that kind of representation and celebration of a child. And so I know there's plenty of people who are not going to agree with me, just in general the rules of internet privacy, and posting your children and that's fine. But for me, give me your cute pictures. Like I love that so much. But also, it's okay, if there was a hard moment. I think it just goes back to Amanda what you were saying about? How do I present this hard moment? Because, yeah, it's not always all sunshine and roses and ukuleles. And that's okay. Like that's real. But in the same way that you think respectfully about your children, when you're posting pictures of them being cute, you know, think about? How do you respect them in their harder moments and your harder moments? And how do you find a way to say, hey, it's not always like this, it doesn't always look like what we're showing on social media. It's hard. Sometimes I want to talk about it. But I want to do it in a way that doesn't overstep boundaries, that I probably would not overstep, if my child did not have a disability.

 

Amanda Griffith-Atkins  28:21 

Yeah, I think that's so important. And there's a part in your book where you talk about, like, I am disabled, it's a very important part of my identity. But it's not all of my identity, like I am a disabled person. Absolutely. It's an important part that I even take pride in, you say in the book, but it's there's other parts of my identity as well, which I think is so powerful, and a good reminder for us to like, the ukulele picture is important, right? If that's something your son is passionate about, and you have trust with people that view your Instagram or whatever, like, post it, right, because our kids are complex, all people are complex, right? Whether you're disabled or not, we all have complexities to our personalities, and hobbies and interests and nuances that make us who we are. So I think that's an important thing.

 

Madeline Cheney  29:11 

I agree with that. We all have varying aspects of our identities, right? So a disabled person is not just a disabled person, they also have lots of different things going on, just like any other human and us as parents, like, like you mentioned this earlier, Emily, but like, I think there is a danger if our only identity is as a parent of a child with a disability, just like any identity, right? If we go too far with it, and that's the only way we identify like, there are going to be issues. And I have I was really thinking about this, you know, prior to this episode, where I think that it could even be a survival skill at the very beginning are a coping mechanism with a new parent who you know, is in like, just oh my gosh, I just tried to like, learn all the different things they need to learn and they're worried about their child and they're hospitalized and just all of that You know, I think sometimes all your other identities do take a backseat. And that could be, you know, what is really at the forefront of your life. And I think embracing that can actually help you get through that. But I do think that at the same time, there can be a point where it things settle down a little bit, and you're able to breathe. And then it's important to be like, okay, like, Who else am I to like, I can't stay in this mode of, I'm a medical mom. And that's all I am. And that's all I do. And it's I think about.

 

Emily Ladau  30:29 

That point about survival is absolutely true, I think, because we let caregivers of disabled people fall off a cliff. So often, we don't talk about disability in general, it's seen as taboo, it's not taught about in schools, we barely acknowledge it, unless it's somehow already a part of our life. Suddenly, you this person, generally you who knows nothing about disability, not really through a fault of your own, but because you just have not been socialized to think it's important to recognize, suddenly are presented with here is an entire human, who has a disability, take care of this human, figure it out. And that's the cliff that people fall off of. And so then they come on social media, because social media is where we get our answers for things and immediately dive so deep into, I'm a medical Mom, I'm a Special Needs Mom, I'm a, you know, mom of a disabled child. And this is all I do now, because I need to figure it out. I don't know what I'm doing. Right, or a dad or a non binary parent, I want to make sure that I'm acknowledging that this is not just about moms. And when we don't immediately provide supports. I think that's when parents scramble, and try to figure out how to make away for themselves and in doing that can cause harm, and can cross boundary lines and make mistakes because we don't provide the resources. So it seems like this scary and bad and negative and terrible thing. Because we have this narrative that the only good thing in life is a quote unquote, healthy nondisabled baby. And we don't leave room to balance the fact that a parent was preparing for this healthy, nondisabled baby, because that was what society said they're supposed to do, then suddenly they have a disabled child, they need to figure out how to care for this living, breathing human being, to care for themselves at the same time, and that's a lot to process and deal with. And so I can see how you can jump immediately in the other direction. And it can be a little harmful. So why aren't we as a society providing supports and resources at the outset so that this doesn't happen so that we don't have frightened, quite honestly clueless parents who were like, I was not prepared for this.

 

Amanda Griffith-Atkins  33:36 

You hit the nail on the head 100%. And I've always felt like there needs to be a book like The What to Expect When You're Expecting, but like disabled version or something, there needs to be a I don't know, if handbooks the right word, but resources at our fingertips, like the go to book. I mean, I always joke like What to Expect When You're Expecting has like one chapter in the very back of the book that's like, if there's complications, or having a child with a disability or something like that. It's like the smallest chapter and it's all the way in the back of the book. And so that's what we get, right? That's what we get when it comes to, okay, I just had a child with a disability. Now, how do I navigate the medical system? How do I navigate early intervention? How do I care for myself? Like, can I quit my job? Or how do I make money when taken care of this child's a full-time job? Right? And so you're so right, the resources are so limited, and then that quickly becomes kind of internalized is like, Okay, well, this is a bad thing. And, and then that becomes our narrative on it where I think you're right, Emily, if there was more support, if there were resources, if there were, if this was just more fundamentally ingrained in our culture, then I think it wouldn't be viewed the way it's viewed because people wouldn't feel so helpless. So I think that is such an important point.

 

Madeline Cheney  35:02 

Yes, like, that definitely needs to be a thing. Like we need to figure out a way to make that happen. Because I agree. And I think normalizing is important. And I think it even goes beyond a lack of information or a lack of teaching or exposure. But even I mean, in learning about ableism, right, like, I think most parents, I had never heard of that word until my son was like, two, and I found it on social media. I was like, What is ableism? Like, what is that? And I think it's, it's after learning about I'm like, I mean, I have a lot of internalized ableism that I've accrued throughout my life. And I know, Emily, you did mentioned that if like, like, that is just how our society functions. And I think that as parents, it's really, really difficult. When we learn about our child's diagnosis, or that they have any kind of medical complications, or any kind of disability, whether it is while we're still pregnant with them, or afterwards, that there is this doom and gloom, and I will acknowledge that there is absolutely that things that are hard, that are just hard, like, right, it doesn't have to ableist just like, I don't know if my child's gonna live, that's hard. But then there's also the, oh my gosh, my child is disabled, like, he's gonna have a horrible life. How will we connect, like, just kind of like the spiraling of like, the way that our society portrays disability does a huge disservice, not only to disabled people, but also to parents, because that's how we go into it. That's the mindset we have. And, you know, there's a lot of unlearning. And that's why I appreciate books like demystifying disability that you wrote, Emily, because it's kind of the handbook I wish I would have found when I was pregnant with my son, like, Oh, look at this awesome, cool thing. And I do think that evolves, at least it has, for me, it's evolved where like, I do have this huge sense of pride that my son is disabled, I feel incredibly proud that he's in that community, and he will grow up in that community. And I'm like, Where was this pride before, like that would have really helped me transition into this lifestyle. And so I think that's a huge part of it, too.

 

Emily Ladau  37:02 

And I want to acknowledge that we need to hold space for the fact that you can be proud of something, and something can be a struggle. And I think that it's something disabled adults grapple with too. But then we kind of take umbrage when it's reflected back at us. For example, last summer, I sustained a pretty bad injury, I fell, I broke my leg, it was a mess, I was just, you know, really frustrated with my body at that moment. And I thought about, do I share how I'm feeling when I'm literally in the middle of finishing up a book about disability. And my whole persona is that I am proud to be disabled. But I shared a photo of myself in the emergency room, because I did want to acknowledge that messy moment where I was not loving myself or my circumstances. And, you know, I recognized that was my choice to do that. And so that's a little bit different than like a parent sharing something. But the overarching point is the same, you know, I wanted to be real and to be human, and not to just be like, Oh, everything is great all the time. And I want to offer families of disabled kids to space to also acknowledge that not everything is great all of the time. And I don't find that offensive in the way that I think some disabled people do. I want to recognize that the humanity of disability is a really messy space to occupy. And that doesn't mean that you are placing necessarily a value judgment on disability. It just means right now, this sucks, and it's hard. And that's life. And that's real. But I'm also proud of who my child is, as a person and this community that they belong to. And so that's what's so important to me, is striking that balance and on the side of disability activist, I think I get judge sometimes that I'm not radical enough that I'm willing to give too much grace to people. But the reason that I want to give grace is because if I immediately jump on a parent and attack them for being honest about the fact that everything is not great. I'm just pushing them further away. I'm not helping my cause. My cause is ultimately to get people to be accepting of the disability experience. But how are you going to do that if you're immediately alienating them?

 

Amanda Griffith-Atkins  40:00 

Yeah, I mean, I appreciate that I think it helps me at least feel like there's more room for discussion, right? Like, there's more room to talk about the hard stuff because it is it is complicated. And our experiences are different. But it does feel like on social media, there is this sort of like us against them thing, which feels so awful to because, like one of the people I love the most in the world is disabled. So, I don't want to cause harm, I don't want to alienate him. And we acknowledge as parents that we're in a power position where we can cause harm, right? So, we have to do our own work to process it, show up, be loving and authentic parents, and also just continue to do the work of unlearning ableism, which is so deeply rooted in our culture.

 

Emily Ladau  40:53 

And how do you and learn something without the support to do it? So again, it's just it's this constant cycle, like we could just go in circles. And I think that we need to acknowledge the complexity of all of this, the fact that there the lack of resources, and the lack of resources contributes to the attitudinal barriers. And the attitudinal barriers contributes to the tensions between groups, and it just builds on itself. So I'm interested in getting to the root causes. And I think a lot of those root causes are, first of all, the lack of resources. And second of all, the fact that, you know, I, maybe I'll get in trouble for saying this. But I think that some activists really alienate people who are just trying to do their best and figure out what it means to understand disability.

 

Madeline Cheney  41:50 

Emily, I'm feeling so emotional Hearing you say that I, I think this has been a huge source of anxiety for me, and probably for a lot of parents, in feeling that hostility and being like, where do I fit in this? And how, how the heck do I raise my son in a way that's appropriate and best for him and best for me and honors both experiences? Because it's very, it's very emotional, like, it's very difficult to feel. I mean, like, Amanda was saying, like, my son is disabled, so to feel like, well, the disabled community hates me, or they probably think I'm so ableist or Oh, no, I'm doing this wrong. Like, I think that is really a very difficult position to be in and reading your book. I mean, when I got it, I'll be honest, like, I was kind of kind of had the defenses up like, okay, is she going to call out parents, you know, she gonna talk about, you know, how we should never mention, you know, our child or whatever, you know, and reading it, I was like, Oh, she's just educating, like, she's being firm and direct, but not being like accusing, and leaving a lot of grace for things we just were ignorant about, and are learning about. And, and even in this interview, I was like, Oh, my gosh, what if she attacks me, like, even though like, I and that's why I had you on is like, Emily, I feel like, you know, you have this respect about you, and that you are willing to be compassionate when, you know, discussing this type of thing. And I, I just really appreciate that. I feel like it's kind of it's so healing, like it is so healing to something that's been really hurting my mama heart, I love my son, with all my might, and my my soul. You know, I love him so much. And so it feels so good to feel that unity that unity feels so healing to me.

 

Emily Ladau  43:40 

I appreciate you naming that. And I'll be honest, like, people don't always love that I tried to be compassionate. Early on, when my book came out, I noticed a division in responses. There were disabled people who blasted it, because it was not radical enough. And then there were parents who blasted it because it was too judgmental, and too radical. And I realized that I feel like the story of Goldilocks and the Three Bears were, you know, too, are too soft, just right. Like it's not going to be everybody's preferred taste, and that's fine. But I ultimately want to bring people in. That doesn't mean I won't call people out, because I will but immediate need to attack somebody, rather than to just try to meet them where they're at and have a conversation. Like I'm I'm not about that and makes me really sad that a lot of people are and, you know, I need to acknowledge that I hold a lot of privilege here, in that I can have these kinds of Open Educational conversations. And it's not a matter of life and death for me, in this particular moment, I can take some time for gentleness and take some time for understanding. And I know that there are people who have multiple marginalized identities in addition to disability where sometimes you've got to be real direct and firm and upfront, because people just aren't hearing you and you need to get through the day. And so, I know that I come to these conversations having I would say a gift in that I'm able to communicate openly without being in survival mode, because I think that for disabled people in much the way that you talked about the survival mode that comes with having, you know, a new disabled child, disabled people are in survival mode constantly. So we're not always looking to check ourselves to be friendly to everyone, sometimes we just really got to get through it. But I am in a position right now in my life, where I'm able to do the work of being a little bit gentler. And getting people to warm up to these conversations first. And I think that is a privilege that I cannot ignore, and one that I am trying to use for good as much as I can.

 

Amanda Griffith-Atkins  46:33 

I love that. I'm very, very thankful that you are because I just think it's has the potential to start to bridge this gap. And it feels so important. And you do have a kindness to you that feels approachable, and maybe some people. Yeah, I feel like it's not radical enough. But I think this is where we start, we have to start somewhere, right? And if every parent is bristly, if every disabled person is bristly, how are we ever going to bridge this gap? And the truth is, our kids are going to grow into disabled adults. So the next generation, I feel like there's sort of some grandfathering that your generation gets to do to our kids, right? So we're all connected, whether we acknowledge it or not. And so I just so appreciate you taking the time for this. And just speaking, honestly.

 

Madeline Cheney  47:28 

Yeah, I really do. I think our kids because of social media, and because so much more is being taught about disability by people like you, Emily that like just all of it all the information that's out there, even if we don't agree with everything and stuff, like I think it is all informing our parenting and can be really awesome. Like, I think about our disabled kids and like, man, like, I think they are going to be better off just from us, like understanding ableism and understanding what that might look like. And just being more aware of what it is like to be a disabled person, because there are people out there that are sharing. And so I really do, I think that is so so valuable. And so Emily, with just the last few minutes that we have, I would love for you to just wrap up with really just any wisdom or advice or you know, just a loving pep talk to parents that are listening right now, that may feel confused about our relationship with a disabled community. What would you like to say and leave with us?

 

Emily Ladau  48:27 

Yeah, it's a great question. And I speak again, like I was saying before, only for myself here. But ultimately, what I want parents to know is that I don't see you as an enemy. I see you as an ally. And Ally ship takes work and Ally ship takes learning and unlearning. And that can be scary and overwhelming when you're trying to navigate that alongside the actual day to day of caring for a child. But I also think that by embracing the disability community by ensuring that your child sees disability representation, by showing that respect for your child's autonomy, no matter what type of disability they have, you're only going to make your experience as a parent and your child's experiences as a disabled person. better in the long run, and better doesn't always mean easy, but better is real and better is good. And so if we can just focus on working towards progress together and trying to find those common meeting points, and recognizing where yes, maybe we do need to push ourselves to learn a little bit more to do better. To Know Better to be better. It's a journey. And it's not always one that's going to be smooth. But it's one that's very worthwhile, and I think will make a world of difference for you and for your child.

 

Madeline Cheney  50:20 

I love that so much a men. Well, thank you so much, Emily. And thank you so much, Amanda, for joining me today in having this, you know, kind of touchy, but very important conversation. I really appreciate it. And I, you know, I'm so confident that it will make a world of difference for so many. So thank you very much.

 

Emily Ladau  50:40 

Thanks for having me.

 

Amanda Griffith-Atkins   50:41

Thank you.

 

Madeline Cheney  50:42 

There are links in the show notes for Emily's book and podcast, and for finding all three of us on social media. So on my Instagram account this week, we'll be continuing the conversation. This episode could have gone on for hours, there was so much more to unpack. So I would love to hear your thoughts and anything you would like to add to the topic on there. And on Saturday, we'll be doing an Instagram Live. So I hope you join us for this important continuation of the conversation. Also, be sure to check out episode 54 with my good friend and disabled adult Erica Stearns. In that episode, she shares what her relationship with her mom was like growing up and gives us advice based on that. It's another gem of an episode and I'll link it in the show notes as well. Join us next week for a Carly Henderson's story episode. She has two daughters requiring specialists and therapists and spends almost every day of the week at appointments with them. Don't miss it. See you then.

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Ep. 90: Living with Sleep Deprivation w/ Jill Arneson Underslept https://d3ctxlq1ktw2nl.cloudfront.net/staging/2022-4-12/4d5d4527-3978-3e8d-d2a1-f3f7f9ce8d4b.mp3

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68: Dipping My Toes into Educational Advocacy

 

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