Raising Anti-Ableist Kids with Ashley Harris Whaley

ablelist accomodations bias disability disabled special needs Aug 01, 2024

00:00:00 Alyssa

You're listening to Voices of Your Village, and today I got to hang out with Ashley Harris Whaley to chat about raising anti -ableist kids. Ashley is a disabled woman, mother, author, speaker, speech language pathologist, disability educator, and activist. She leads adult programs and research for the Cerebral Palsy Foundation and is the founder of Disability Reframed, an online platform focused on changing perspectives through education and conversation. Ashley is an experienced writer, consultant, and public speaker who delivers impactful messaging. Her writing has appeared in Refinery29 and TripAdvisor, and her debut children's book was published in May 2023. And I'm excited to share that her children's book, I Am, You Are, is out now. Go snag that bad boy. I Am, You Are. I have been learning from Ashley online for a long time and it was so rad to get to hang on the podcast and chat. I continue to learn from her all the time and I'm excited to share this one with y 'all. All right, folks, let's dive in.

00:00:04 Alyssa

Hey there, I'm Alyssa Blask Campbell. I'm a mom with a master's degree in early childhood education and co -creator of the Collaborative Emotion Processing Method. I'm here to walk alongside you through the messy, vulnerable parts of being humans raising other humans with deep thoughts and actionable tips. Let's dive in together.

00:00:25 Alyssa

Ashley, where are you from?

00:00:27 Ashley

So I'm in Asheville, North Carolina. I don't know if you know where that is.

00:00:32 Alyssa

100%, yeah.

00:00:33 Ashley

Yeah. Where are you based? Remind me.

00:00:36 Alyssa

I'm in Burlington, Vermont.

00:00:39 Ashley

Oh, awesome. I would vibe so hard with Vermont.

00:00:43 Alyssa

Yeah, for sure. I feel like Asheville, there's like a similar vibe I've heard. Yeah.

00:00:49 Ashley

Yeah.

00:00:50 Alyssa

You have you have a lovely Southern accent. And I am realizing now that every time I've like consumed any of your material, I always have sound off on everything because I parent. And so now I'm like, I wonder what everyone else's voices sound like. This is so fun.

00:01:07 Ashley

It's like sort of a funny experience or like you have an idea of what somebody sounds like in your head, and then you hear them and it's like completely incongruent with what you think.

00:01:17 Alyssa

This is what I'm experiencing and I love it. This is so fun.

00:01:21 Ashley

Well, happy to provide that entertainment.

00:01:24 Alyssa

Yeah, thank you. Oh my gosh, I didn't know you had a Southern accent. How cool. But this is the plus side of getting to interview folks that I typically just get to see online.

00:01:35 Ashley

I love that you have this podcast. I think the first episode I listened to was Victoria Facelli. I love Victoria. We've been Instagram friends for a really long time. I rue the day when we could be real life friends.

00:01:52 Alyssa

Well, you both are in North Carolina, we can make this happen.

00:01:55 Ashley

Five-ish hours for me. You know, not super close by, but not super far.

00:02:01 Alyssa

It feels achievable.

00:02:03 Ashley

Yeah

00:02:04 Alyssa

We can make this happen. I love this.

00:02:07 Ashley

I've been toying with a podcast idea for a long time. I just I'm at the point in my life where I need to be less on the internet, not more on the internet. But that's on my list for when I feel like that balance is attainable.

00:02:25 Alyssa

Yeah. Yeah. Let me know if you find that attainable balance still searching.

00:02:30 Ashley

I think it's just shades like I don't, I don't think you ever really like get there. I think things just shift and like priorities come on and fall off.

00:02:40 Alyssa

Yeah, it's true. Yeah. I'm very much in a season right now where being on the internet feels hard. But just, I feel like time is so stretched, you know, between...

00:02:53 Ashley

I empathize 1000%, which is why I've really neglected my internet space in the last year. And like, it shows, but at the same time, like, I don't actually care. Like it's also fine. You know?

00:03:08 Alyssa

Yeah. I found myself, I did this also with when Sage was born, where like, when I was pregnant, and it felt really easy to show up. And then my first year postpartum with him, just went, I wanted to go into like a little bubble, and cocoon.

00:03:25 Ashley

I feel that very much.

00:03:26 Alyssa

And now I feel it with Mila. She's five months old and I'm still like, yeah, I'm still cocooning. Like it feels hard to share things. Even things that like aren't hard to share that I think like could be beneficial to share, et cetera. Just, I don't feel drawn to share. And so I feel like it feels hard for me to do it authentically.

00:03:50 Ashley

I'm glad we're having this conversation because you're one of the few people that I've talked to that I think is having like a parallel experience to what I had. I think a lot of people, you kind of go one of two ways is from all the people I've talked to, you either like lean really hard into it and like almost like not that they're like overshare, like you find that that you're like really compelled to do that or you have on the flip side sort of me and you where I just withdrew completely and was like, I don't want to share anything about this with the internet. Like I want to live this part of my life because I know I'm never getting it back. And I don't want to feel like I have to perform it for somebody.

00:04:36 Alyssa

Correct. That's how I felt with Sagey. That's exactly it. I knew I just wanted to be in it and not sharing it. And then this one, I feel like there's not enough time in the day. But the idea of like, oh, and then I'm going to use these, quote, spare five minutes, where are spare five minutes at this point, and share something just doesn't feel, yeah, I guess like where I'm pulled to right now, but it's been interesting because I with Mila, I've experienced postpartum depression and I'm now on an SSRI that's raging and I love it.

00:05:14 Ashley

Go girl. Go.

00:05:14 Alyssa

Thank you, Love it.

00:05:17 Ashley

Like a freight train. I was not, not the depression, so to speak, but the anxiety and the OCD. I thought I am losing my ever loving mind. Like..

00:05:32 Alyssa

I don't know if it felt this way for but I kept saying to my doctor, because I've a psychologist that I see like therapists, I see regularly, and then also my regular doctor, I like PCP. And I was like, I don't know how else to share this other than it is chemical. Like it is, I can't emotion process my way out of this. Things aren't actually like so hard, you know, like,

00:05:55 Ashley

Like something is chemically imbalanced in my brain.

00:05:58 Alyssa

Yeah.

00:06:00 Ashley

And I went to the OB, she was like, yeah, you have maybe the worst case of postpartum anxiety I've ever seen. And you probably have postpartum OCD. And that is what this compulsive, like intrusive thought loop that you're trapped in is, yeah, it was the weirdest. I was washing my hands so much that my hands were like bleeding. And then it was like two months later, just like a fog, just like lifted.

00:06:27 Alyssa

Medication? Or with support?

00:06:31 Ashley

Medication and sleep. Mostly sleep. I was just, I think, dangerously sleep -deprived at that point. And it's not like it has completely gone away. I still have the rogue, intrusive thought. That still occasionally happens, but it's on a much more, like, that's not real. Yeah.

00:06:55 Alyssa

Yeah. Isn't it? For me, it was so disconcerting. Because I was like, Oh, I can't like do my way out of this. Right. And, and at the time, Mila was sleeping like an eight hour first stretch. She's did a long she did a long first stretch for a little while. We're not in that right now. Don't you worry. But we had that. And so I was like, All right, I'm actually sleeping like all these other things are in place.

00:07:22 Ashley

And it's still happening.

00:07:23 Alyssa

Exactly. And but so I've been like, oh, I feel like I'm probably not alone in this experience and sharing it might be helpful for others, might be helpful for me and still I just haven't felt a pull to share. I've talked about it here on the podcast, but not on social.

00:07:41 Ashley

Like I've said, you know, I have postpartum anxiety and postpartum OCD, but I haven't said like, oh, this is how bad it got.

00:07:49 Ashley

Yeah.

00:07:50 Ashley

And I might at some point, but it's also like, yeah, I don't know. I'm with you. I felt very closed off about...I thought I'd post a lot more disabled parenting content, which I have not done for similar reasons. Yeah.

00:08:07 Alyssa

But I, it's just, yeah, it's been interesting. Like I just haven't felt pulled to, to share it. I have talked about it here and I think that for me, I love the podcast format for having real conversations. You can get the nuance of conversation, you can get tone, you can have a more in -depth thing than this is in a post or stories.

00:08:31 Ashley

Agreed, 100%. Do you feel like you might be climbing out of it a little bit?

00:08:36 Alyssa

I do. I love an SSRI. It's my first time on one. I was like, Can we talk about how great this is?

00:08:41 Ashley

Yeah. I'm not on one anymore, but I was for a while and bless up for Zoloft. Like bless up for Zoloft.

00:08:51 Alyssa

Yeah. Legit. Legit. Okay. I feel like I know so many random things about you from the internet. And then I feel like there's so much that I don't know, which is, I think probably how all of us feel about the internet and humans that we see. Do you, have you ever shared what your disability is?

00:09:11 Ashley

I'm one of those like funny, it's probably not a funny case, but like sitting right here, you probably can't like tell that I'm obviously disabled. Right. But

00:09:21 Alyssa

Correct.

00:09:21 Ashley

Like if I got up and went and opened that door, you'd be like, Oh, there it is. So yeah, I have spastic diplegia cerebral palsy. So cerebral palsy, lower half of my body.

00:09:35 Alyssa

Got it. Okay. Okay.

00:09:37 Ashley

From birth, baby.

00:09:38 Alyssa

From birth?

00:09:40 Ashley

Yeah. I was born prematurely while my parents were on vacation.

00:09:44 Alyssa

Oh, wow.

00:09:45 Ashley

At the beach.

00:09:45 Alyssa

What a vacation.

00:09:47 Ashley

Yeah.

00:09:48 Alyssa

Where were they?

00:09:49 Ashley

They were in Charleston with their best friends to celebrate the 4th of July. And my mom was only 27 weeks pregnant. So they thought it would be like a routine weekend. And they came home three months later with a three month old premature little nugget.

00:10:11 Alyssa

Oh my word, what a vacation.

00:10:16 Ashley

Yep.

00:10:17 Alyssa

Ashley, do you have any siblings?

00:10:19 Ashley

I do, I have a sister, she's 28, 27.

00:10:25 Alyssa

I don't know how old you are, so is she older or younger?

00:10:27 Ashley

Yeah, she's young, she's four years younger. Yes, she's delightful, We are different in every conceivable way that a human could be different. She has no social media presence whatsoever. She lives a completely analog life. It's amazing.

00:10:45 Alyssa

Jealous. That sounds lovely.

00:10:47 Ashley

She is. She's a director of a summer camp. You know, we live in a very like crunchy, outdoorsy sort of place. So she just mountain bikes and hikes and lives her life off the grid. But it's truly admirable.

00:11:03 Alyssa

That sounds so nice for her mental health.

00:11:05 Ashley

Yeah, for sure. Yeah.

00:11:09 Alyssa

When you were diving into the process of having kids, I'm curious what resources were available to you as you were trying to figure out what does this look like for me? Both the, not just the pregnancy and having of the kid, but what does it look like to navigate parenthood as a disabled human component.

00:11:33 Ashley

I talk about this a little bit online, but I like never grew up like dreaming about being a mom. That was just not I was dreaming about this, I don't know what kind of what this says about my psyche, but like dreaming about being president of the United States, a famous actress, a ballerina, like anything big, like I'm gonna do some big shit. I don't know exactly what that's going to be, but I know it's going to be big. And then I met my husband, which like now probably like eight years ago, which is kind of wild. I met him on Bumble. I asked him to tell me his life story in 10 emojis and he was like, I don't know how to use emojis. And I was like, okay, hot, cool. And he's full disclaimer, he's six feet, 10 inches tall. And that is precisely the reason that I swiped right on him. I saw that in his profile and I was like, hot.

00:12:31 Alyssa

That is so tall.

00:12:33 Ashley

He's so tall. He's so large.

00:12:37 Alyssa

Wow okay.

00:12:38 Ashley

Went on one date, and I was like, yep, I'm, I'm gonna marry him. And he felt the same way. So it was very fast. And then I was like, okay, I could have this specific man's babies. Like, I could, I think I could. And then we were like, okay, well, I'll finish grad school. I'll start practicing as an SLP and your clinical fellowship in speech pathology is nine months long. And I was like, perfect. We'll just get pregnant right away. I'll be pregnant for the duration of my fellowship. I'll get my license and then I'll take a year off and be a stay at home mom, and then I'll figure the rest out. Well, then infertility hit me like a semi -truck, and then COVID hit like a second semi -truck. All of that just sort of like, you know, it did not, let's say, go according to my plans.

00:13:35 Alyssa

Yeah, same.

00:13:37 Ashley

Summer 2019, and Ingrid is a year old, if that, you know, gives you an indication of how well my plan went, but I didn't think a whole lot or get a whole lot in my head about how I was going to be a mom, as far as like being a disabled mom goes, because I had just had about a year and a half to really say, yeah, this is actually something that I think I want to do, not something I feel like I have to do or is like some sort of societal pressure, but like, I actually think I want to do this. And then I started to think, okay, well, what, you know, what are the logistics of that? Like, what is that actually going to look like from like a physical standpoint? And then I didn't have too long to hang out in that headspace because then it was almost immediately replaced by, oh, well, can I actually have a kid? Like, is this actually going to happen for me? I had two miscarriages in 2020, like within three months of each other. And then it very much was like something is like something isn't right.

00:14:48 Alyssa

Almost same.

00:14:49 Ashley

Yeah. Yeah. And it was like, OK, well, I don't have time to worry about what being a disabled mom is going to be like because we've, we've entered the territory of is this even on the table?

00:15:01 Alyssa

Sure.

00:15:02 Ashley

And I feel like, you know, you can probably at least relate to part of that. It sort of supersedes any other worry that you've got going on. And it consumes your entire life.

00:15:16 Alyssa

Everything, it's so consuming.

00:15:19 Ashley

Yeah, it's insane. And then the infertility trek started. People call it a journey, and I'm like, no. A journey is like frolicking through a field of puffed -out dandelions. This was like packing up the Himalayas with flip -flops on. I mean, it's like a trek. It's not fun or pretty. Yeah, so I just didn't think a lot about it. And then I started being active on the internet in like the spring of 2020. I was working in a as an SLP, my clinic closed, I had an inordinate amount of time on my hands. All right, to that lifestyle that I would do a little something on the internet. And so I started disability reframed. And then started like following all these disabled baddies, some of which happened to be moms. Alex Wegman, Rebekah Taussig, my bibles, those two women actually showed me that if I could get over the infertility hump, like, yeah, I could be a mom and like a damn good one. You know, like, I could do it really, really well in a really cool, inventive way. And they were just talking about parenthood in ways that I'd never heard anybody talk about parenthood before. I say I didn't grow up wanting to be a mom because I wanted to like, I don't know, be famous or whatever, which sure, that's part of it. But I think if I really like step back and examine it, part of that also comes like if you don't see yourself

00:16:59 Alyssa

Totally,

00:17:00 Ashley

In those roles, if you don't see people like you in those roles, then you don't consider them as a possibility for yourself. And all of a sudden there were these women, Alex, Rebekah, Lucy Catchpole in the UK, who were showing me like, actually, yeah, you, you can do this. We are doing this like, and we're doing it quite well. And that is really what sort of changed everything for me. Of course it was the internet, right? It all comes back to the internet, but it was being able to see it happen in like real time.

00:17:36 Alyssa

Yeah, I was just thinking, I followed Alex for a long time. And I was like, Ooh, did one of you lead me to the other one? I wonder.

00:17:46 Ashley

She is a marvel.

00:17:48 Alyssa

She's awesome. Yeah, she's awesome. Rad. I also, there's a new book coming out. I have a manuscript I'm supposed to be reading in my spare time for a friend that's called Unfit Parent that I'll share-- Jessica Slice.

00:18:06 Ashley

Yes, I need to be I need to read that one as well. Jessica Slice's writing is--

00:18:11 Alyssa

She's awesome.

00:18:12 Ashley

It is like --she's otherworldly with what she writes truly.

00:18:18 Alyssa

She, connected with her a long time ago, she's actually been on the podcast too, and I'm super excited because I feel like she, I have not read this manuscript yet, but from what she had shared about it when she was writing and kind of leading into it, she was like, I'm writing the book I needed as a disabled parent that I didn't see up there from a parenting perspective. There's a bunch of parenting books. I wrote one, right? Like there's a bunch of parenting books. And she was like, there isn't the parenting book for being a disabled parent. And I'm excited to dive into that and was curious to hear kind of your thoughts on it. But I'm, I guess, to be continued on that.

00:19:02 Ashley

Yes. To be continued because I also have that in my inbox too. Yeah.

00:19:08 Alyssa

Great. Let's continue that conversation. One thing that I am curious about as you're raising Ingrid, are there open conversations in your household about your disability and like how, you know, at some point she'll start to notice other humans in terms of differences, just as we all do. And so I'm wondering what that looks like in your household and then what it can look like in other households in terms of conversations we can have around how our bodies work, etc.

00:19:43 Ashley

I think that's a great thing because, let me see if I can figure out how to articulate this. The reason why, let's be honest, children are curious creatures.

00:19:55 Alyssa

So curious.

00:19:56 Ashley

So curious. I've worked with so many of them all across the spectrum of children and they are all curious. That does not give them a license to be little buttholes to disabled people in public. And unfortunately, that is what ends up happening. Like,

00:20:19 Alyssa

They'll say rude things.

00:20:20 Ashley

They say rude things, they laugh, they point, they stare. And that's happening because disability is not a part of their world. It is not a part of their worldview. And then when they're confronted with something outside of that, that's that's when you get those like ugly behaviors happening, right? They don't necessarily mean to be ugly when they're doing it. But it still doesn't mean that it doesn't leave that kind of impact.

00:20:53 Alyssa

Sure.

00:20:54 Ashley

You know, five years ago, I still remember this. I was just in my Publix going to get some ice cream and like an 8 year old and 11 year old start pointing at me and like loudly talking as if I'm not even there. Oh, look how she walks. She's so gross, what's wrong with her? And like I normally don't let that kind of thing get to me because this has happened ad nauseum my entire life, but I literally like went around the corner and cried, because I was like this is not a three -year -old. Number one, like these are children who think it's okay to call another human being gross and have no consequence like for that action, or no understanding of how hurtful those kinds of things are. Or like when I worked, you know, as a Peds SLP, there were a lot of questions about like, Miss Ashley, why do you walk like that? Like, why are your legs like that? One kid, I have like a lordotic spine, so I have like a spine curvature, so like my butt pokes out by virtue of the way that I stand. It just is how it is and he was saying why do you stand with your butt poked out like that all the time? Like you know curious questions, like they do add up over time and sometimes you can redirect and then sometimes I felt like it derailed my entire therapy session because I was spending 45 minutes trying to redirect this kid away from the way that I walk. And what happens is if disability isn't normalized for kids, and unfortunately like sometimes even when it is, those things happen and the burden of that education falls on to disabled people who more often than not are complete strangers to these children, or like in a position of some sort of authority, like in a therapist context or a teacher context, still shouldn't have to be doing the lion's share of that education. That education needs to be happening inside the home. And it's a two -fold process, right? It's easy to say, okay, get your kids some disability representation. That's step one, right? Disabled toys, books featuring not just storylines about disability, but like disabled people just living their lives and doing their thing. I think that's like the final frontier of disability representation, right? Like, right now, we're still very much in if there is disability representation, it's very much a part of the narrative.

00:23:34 Alyssa

Yeah, this is one of my pet peeves with kids books, even with, we see it with queer representation, there's been a shift now, but it was like, when I was teaching earlier on years ago, the books that were available were like, I have two moms. Can we just have a storyline where there's two moms?

00:23:49 Ashley

And I, unfortunately, like, we're not quite there yet. Like, I think the tide is turning. I see it. It's starting to happen. But I guess, you know, for now, we'll take what we can get.

00:24:01 Alyssa

Sure.

00:24:01 Ashley

But like, it's easy to say, get your kids disability representation, like surround your kid with disability in their world of work and in their world of play. And that is how it becomes normalized to them. But the, I think the twofold part of that is it's also a parental responsibility. The child's parent or whomever is the steward of their life, right? If they're not also participating in that, if they're not also consuming disability representation, like it's not going to do as much good. You have to sort of take on that responsibility as well, so that disability is normalized for you too. And you're internalizing disability isn't a negative. Disability isn't this extra awful weird thing. It's just like a neutral part of human diversity. It can sometimes be hard for a kid to understand that, but that's not hard or shouldn't be hard for an adult to understand.

00:25:04 Alyssa

Sure. I think so many adults though grew up with that narrative, right? So now there's a lot of unlearning,

00:25:10 Ashley

Unlearning, a lot of reframing, and the only way you can do that is let disabled people teach you. You know, I do a lot of work around anti -ableism education in a lot of different settings, and one common thread of a question that I always get, no matter where and when I am educating, is how did we get here? Like, how did we find ourselves in a society so ableist, but also so ableist that it doesn't even see it. It's not even on its radar. And I think my answer to that is, I would say until the last five, six years tops, disabled people have not been driving the narratives around disability, period. Not even been invited to the conversation or to the decision -making table most of the time. And the only reason that we're seeing the slightest blip of change in the way society looks at disability is because we are finally the ones who are leading the conversation.

00:26:21 Alyssa

That makes total sense. And where does that show up? Where do you feel like there's been a shift where disabled folks are leading those conversations?

00:26:30 Ashley

The internet. The internet. And then using the internet as a tool to fight your way into other spaces. When I first started my Instagram, my husband was like, I do not understand the point of this. I do not understand why it is important to create things to get likes.

00:26:50 Alyssa

Sure.

00:26:52 Ashley

Four years later, when it has culminated in speaking engagements at top med schools or for large corporations or for consulting with places like Fisher Price or like, you know, the Molson Coors Beer Company, like, he finally is like, I see what you are doing. You are using the internet as a tool to move into other avenues to educate people. And I'm like, yes, thank you for finally catching on.

00:27:22 Alyssa

Yeah. It gave you a space to be seen.

00:27:26 Ashley

Yes. It's given so many disabled people a space to be seen. I'm just one of like, I don't know, 100, 200, like so many quality, smart, talented people putting such amazing content out there largely for free.

00:27:45 Alyssa

Yeah. Yeah.

00:27:45 Ashley

People don't take enough advantage of it. Like listen to our podcasts. Like read our books. There's so many books in the last few years written by amazing disabled people. It's a wealth of resource.

00:28:01 Alyssa

When it comes to raising anti -ableist kids, you mentioned the like diversifying their media and what they're consuming and making sure that that's a part of this. Diversifying ours as the adults with them. What other components go into raising anti -ableist kids?

00:28:20 Ashley

Well, I think those are two really big ones and those are probably the two most attainable. Those are the two I think that people balk at the least. But like, you've also got to get your kids in spaces where disabled people are. We're not werewolves. Like, we do actually come out in the daylight into the world and like just let them absorb it. I know that sounds like so cliche but I think the representation piece of it is the easiest lift.

00:28:54 Alyssa

I think though like the exposure to is one thing, representation exposure to folks. The next that I see is, and the gap is, how do we then talk about disabled people with children?

00:29:09 Ashley

The education piece of it. Yeah.

00:29:11 Alyssa

Correct. And the modeling. Right?

00:29:13 Ashley

And the modeling. You can't have that without the representation. But once you've got the representation there, you, okay, so let's use the grocery store as an example. Yes. Right? Since we were talking about the grocery store. How old is your oldest child?

00:29:33 Alyssa

Three.

00:29:33 Ashley

Three. Perfect. Perfect. So you and Sage, we meet at the grocery store. And he says, Mommy, why does that lady walk like that? Or what's wrong with that lady? And you say, well, she probably has a disability. And some people have disabilities. And some people just walk differently than we do. Or some people use wheels, like a wheelchair or a walker or crutches, to get around in the world. Like, you adapt these kind of scripts, right, to your kid's age. If they're a three -year -old, you're going to be very simplistic. You're not going to say any more than what I've just said. But if they're nine, you might say, you know, some people have disabilities that you can see. Some people have disabilities that you can't see. Everyone's disability looks differently, every disabled person is different, has different needs, like you just use these like questioning times not to shush them or say be quiet, don't stare, don't you know, like because then that creates sort of like a culture inadvertently, like a culture of fear and a culture of questioning and that's part of the problem, that's part of how we got there is this bias and stigma that's all wrapped up in this yarn ball of, if we're going to be frank about it, fear and discomfort.

00:31:05 Alyssa

I think discomfort is huge.

00:31:07 Ashley

I say all the time, we can just say point blank, outright, disability makes people uncomfortable.

00:31:16 Alyssa

Sure does.

00:31:17 Ashley

It makes people uncomfortable for a whole host of reasons, not the least of which is that I think at the back of most people's minds, they're a little bit aware that at any time, it can happen to them. Like,

00:31:29 Alyssa

Correct.

00:31:29 Ashley

We're one of the only clubs that likes open enrollment all the time, you know, like we're not exclusive. And I think that that discomfort is what perpetuates a lot of the bias and a lot of the stigma and a lot of the ableism that we face. So we've got to get comfortable with disability and we've got to make our kids comfortable with disability. Part of that happens through representation and part of that happens through honest conversation and modeling, which is not an easy lift. Like let's just talk about that for a second. It's one thing to like buy your kid a book that's got disabled people in it. It's quite another to sit your kid down and explain to them, whatever their age and cognitive level is, what disability is. And like, I'm not immune from that experience. I think that's worth saying, like, there will come a day when I will have to sit Ingrid down and have this same conversation with her.

00:32:33 Alyssa

That's why I asked that.

00:32:34 Ashley

Yeah, she's gonna notice, like, that I don't walk like the other moms, or we don't go to toddler yoga, because, like, I can't really do all that much yoga.

00:32:48 Alyssa

Sure.

00:32:48 Ashley

I'm far too stiff for such an endeavor as that, but like she's going to pick up on those things. So I'm not saying this from this place of like, oh, I'm above reproach. Like I'm saying this from a place of I'm going to have to have these same conversations with my own child. I can't be her only representation of disability in her life. If I were, I would be doing her an enormous disservice.

00:33:15 Alyssa

Yeah. Yeah.

00:33:17 Ashley

If that makes any sense.

00:33:19 Alyssa

It makes total sense. And you know, I hadn't thought about the, I was sitting with that piece that you mentioned on like the open enrollment, that it could happen to any of us and that underlying fear. And really what I hear there is this idea that being disabled is worse, than it's less than, because if it wasn't worse, there wouldn't be a fear, right? If folks who weren't disabled saw it as equal footing, they wouldn't be afraid of it.

00:33:51 Ashley

And I think you're exactly right. I think we, and I mean people who are not disabled, and sometimes people who are, you know, we have been conditioned to view a disabled life as a lesser life, a less complete life, a less fulfilled life, a harder life. And I would be lying if I said that my disability did not make my life harder. It absolutely does, like, in a lot of ways. But what really makes my life harder is living in a world that, number one, is not designed for me. And number two, most of the time does its dead level best to exclude me or leave me behind. That is what really makes my life hard. I could show up to toddler yoga with Ingrid if I felt like I would be accommodated or welcomed, but I do not feel that I would be. Would I be able to do all the moves? No. But if I were accommodated and made to feel welcome, would that matter?

00:35:02 Alyssa

Right.

00:35:03 Ashley

No. So it's truly a double -edged sword. We don't lead sad, pathetic, pitiable lives. We lead really robust, fulfilling, wonderful, amazing lives who add a lot of value to the world around us. But we also lead lives that are hard. They're hard because we have a limitation. Let's just be honest about it. And they're hard because we live in an ableist world.

00:35:31 Alyssa

Yeah. because of the systems.

00:35:33 Ashley

Yeah, because of the systems, because of the barriers, because of the stigma, because of the attitude that we are less than, that we are inferior. Like, imagine having to fight against that in every room you ever enter to have to prove that you deserve to be there. And that--

00:35:54 Alyssa

To literally fight to get in.

00:35:56 Ashley

Literally, like, even if you can't get in the door, right? You still have to prove that you deserve to be in the room. And the added weight of that just accumulates and accumulates. And I think a lot, like if we want to talk about Ingrid for a minute, I think a lot about, and I've posted some about this and some people seem to get what I'm saying and some people really seem to not get what I'm saying. I do not have anxiety, well I do, about a lot of things. I do not have anxiety about how Ingrid will view me. Not one thread. I do not worry about Ingrid and I. I will always just be her mama, and that is it. For better or worse. What I worry about when I lie awake at night and cannot calm my brain down is how do I stop the world's perception of me from finding her? How do I stop the way the world sees me from, damn it, I better not cry,

00:37:09 Alyssa

You're welcome to cry here.

00:37:10 Ashley

From rubbing off on how she sees me? That's never going to just happen. It's going to happen because somebody somewhere else puts that in her brain.

00:37:26 Alyssa

Yeah. That outside influence.

00:37:28 Ashley

That's what I worry about.

00:37:30 Alyssa

Sure. Sure.

00:37:32 Ashley

And some people say, oh, I totally get what you're saying. And then some people are very much like, that'll never happen. She'll only ever see you as her mom. And I'm like, that is just, that is just not true to say that it'll never happen. I hope that it never actually takes root, but we can't say she will never be confronted with a situation where she understands that I am thought of as less than. And then how do I navigate that? I don't know. I don't have an answer for that. I think I'll probably just have to figure it out as it comes.

00:38:10 Alyssa

I would wager a guess that by the time she's there, she would have had enough exposure to the systems and conversations about the systems and I think even potentially historical context for disabled folks in the U .S. to know that this is a cultural perspective and it's not true and it's not your story and it is also a cultural perspective, that both of those things are true.

00:38:42 Ashley

It'll be interesting.

00:38:44 Alyssa

Damn.

00:38:44 Ashley

She's a smart girl, like she'll figure it out. I have no doubt, but I just wish that wasn't even something I had to concern myself with, you know? How great would that be?

00:38:58 Alyssa

Absolutely. What do you wish the world knew about the experience of living with a disability?

00:39:08 Ashley

Man, there are so many things, but I think the number one thing is that we're so cool. Like, we're a really resilient, adaptable group of people. Like adapt might as well be our middle name, like, you know, a lot of that resilience and a lot of that adaptability is cultivated in us by forces that are not within our control at all. So it's weird to say that's something like you're proud of, but I just wish the world knew that we don't see ourselves as the world sees us. Those two perceptions are not the same. And if only they'd let us lead and they'd listen, they might sort of begin to see disability and the people who live with it, the way we see ourselves.

00:40:18 Alyssa

Yeah, as humans.

00:40:20 Ashley

We're just not quite there yet. You know, I think we're getting there, but I think that's what I wish above. There are so many things that I wish the world knew. You know how much value we add, how much like how great our stories are, how smart we are, how capable we are, how much we have to offer the world. But like the bottom line is that we don't see ourselves the way that you do. Not you, you, but like, we just don't. And that's the whole problem.

00:40:51 Alyssa

Yeah. Yeah. It's wild, but it is the whole problem. It's like it's when you boil it all down.

00:40:59 Ashley

Yeah I'm not saying that facetiously.

00:41:00 Alyssa

No, yeah, it is. Do you have a few favorite children's books to recommend for folks who are tuning in who are like, I would love to build my library?

00:41:11 Ashley

So many, okay, well, I'm gonna start with my own.

00:41:13 Alyssa

Please do.

00:41:14 Ashley

If I can. It is called I Am, You Are: Let's Talk About Disability, Individuality and Empowerment. It came out in the UK last year and it comes out in the US this fall, so you can snag your copy. It is a very like neutral approach to disability. Disability is human diversity. That's the whole angle. A few other ones that I love. Anything written by James or Lucy Catchpole in the UK. So they have, um, What Happened to You?, You’re so Amazing. And Lucy has a new one coming out called Mama Car. Anything written by Amy Webb. And now her daughter Grace is in on the action, which I love. Hers is the, um, When Charlie Met Emma, Awesomely Emma. There was another really cool one. I'm going to taper off here now because I'm not going to be able to remember. There's so many children's books.

00:42:14 Alyssa

Those are great recommendations. Amy Webb is on my list.

00:42:18 Ashley

But there are just droves.

00:42:22 Alyssa

Thank you. Thank you for sharing your story, for being a voice in this space and jazzed to get your book, your children's book too, where can folks find you, follow you, learn more about you?

00:42:38 Ashley

Uh, you can follow me if you want all the disability content at Disability Reframed on Instagram. If you want to see pictures of my house, read my poems, see my dogs or the back of my baby's head only, you can follow me at Ashley Harris Whaley as well. Watch those spaces, I guess, for fun stuff coming. Thank you so much for having me. I've enjoyed it so much.

00:43:02 Alyssa

Thank you so much for joining me.

[Music]

00:43:11 Alyssa

Chapter 8's a doozy, man.

00:43:13 Rachel

Yeah. I mean, I didn't realize how bad it was until I had been trying for literally weeks to write it and then I wrote Chapter 9 yesterday in one day.

00:43:22 Alyssa

Yeah. And this is how I feel too. I keep like coming back to it. I'm thinking about it. I couldn't find Addiction Inoculation, my copy of it, Jess Leahey's book. I'm going to the bookstore to pick up a copy today because I was like, I need that when I'm writing the substance part. But just is so, it's so hard. Like this chapter for folks tuning into this, if you haven't heard yet, we're writing a second book for kindergarten to fifth grade age range. And chapter eight is right now all about sex and puberty and substances and the like taboo topics and how do we support kids through them, through the emotional components of them, what can we expect to come up socially, et cetera. And it's been our hardest chapter of the book to write.

00:44:21 Rachel

And we've written some heavy chapters already, but I think what feels hard for me about this in particular is that there are so many cultural and religious ideologies that really shape this for families at a fundamental level. And so, as I was trying to write it, and eventually I just gave up and handed it to you, but I was like, where do I draw the line? How deep do I go? Because what I really want is for anybody to be able to read chapter eight and be like, okay, this is something that I can use, regardless of their personal ideology.

00:44:57 Alyssa

For sure. And I think that's where like, I don't want to give scripts on like, here's how to talk to your kid about sex. What I do want is to help the adults with the tools for maintaining a relationship where kids can come to them and talk to them about anything without shame or blame. And that's what I want to support the adults with, not necessarily the content of what do I say to them in this. There are a lot of different rad resources and really ways to approach that depending on your cultural values. What I want is that kids have a safe space to turn to talk to them about whatever comes up.

00:45:45 Rachel

Yeah, like if a young girl thinks she doesn't have the hole for the tampon, to feel like she can go to her mom and be like, hey, I don't have that hole, now what?

00:45:55 Alyssa

Exactly. And not get like laughed at. Or then like, you know, kind of for me as a 14 -year -old, when I experienced sexual assault, because I didn't have somebody that I could talk to about my body, about sex, about puberty, about anything related to my body, I didn't have an adult to turn to, to share that with either. And so for me, it's the like, yeah, when you're in the kind of, what we might think of as like minor things, like how do I use a tampon, to, do I have someone to turn to if something happens to me? And that's what I wanna help adults really cultivate and maintain is that relationship, not necessarily the like, how do I talk to them about their body?

00:46:50 Rachel

Yeah, same.

00:46:52 Alyssa

It's hard to write. It's hard, man.

00:46:54 Rachel

It's really hard.

00:46:55 Alyssa

Yeah. I've got to finish it. My goal is to finish chapter 8 tomorrow.

00:47:02 Rachel

Godspeed.

00:47:03 Alyssa

Thank you. Thank you. I need it. Woo. Oh, man. The other night, it was like a total S show of a night. Mila was up a bunch. Sagey woke up. Actually, it was kind of comical. Mila had been up a bunch and Zach had been supporting her. I was like, I can't, I just, my body needs a break. My mental health needs my body to have a little break. And so I had like, Zach had been on for a chunk of the night. And then when I tapped in, I was like, why don't you go sleep on the mattress that's on the floor in her room, and I'll stay and just nurse her on and off. And so I'm in bed with her. She nurses to sleep, we both fall asleep, Zach's gone. And all of a sudden I hear, mama, mama, mama, and I like shoot awake and like, what? And like have to like really orient myself at this point. And I like glance at the clock and it says five and our family is not a five o 'clock family. We are a seven o 'clock family and Sage knows his numbers, like can read his numbers. And so he knows he's not supposed to get out of his bed until there's a seven as the first number. And then if he wakes up before there's a seven, he can read his books in his room, whatever. And largely, that's been working for us. And so it's like five, and he's like, mama. And he just goes, excuse me, mama. He's being really sweet. And he's like, I was wondering if I could come up into your bed. And trying to figure out, at that point, I'm just going to pull him into bed. He's a terrible co -sleeper. He's all over the place. If he's next to Mila, he's going to hit her on accident. So I'm trying to figure out, how do I restructure where she and I are to make space for him? And then Zach, like the angel that he is, shows up in the doorway and is like, hey, Buddy, come with me. And swoops him back in and ended up taking him into Mila's room with him. It was just like, you don't have to sleep, but my body needs sleep. And Sage ended up falling asleep next to him. But then,

00:49:16 Rachel

Oh wow.

00:49:16 Alyssa

It was so rad, but then on the way to school, so for Zach, all in all, he didn't get much sleep, right? He was up with Mila a lot, and then had just fallen asleep, ends up with Sage, Sage in bed next to him. The next morning, I'm driving Sage to school, and he goes, Mama, last night, I heard bees outside, and I thought they were in my room, and I was all by myself. And Mila wasn't there, and you weren't there, and Dada wasn't there, and I was all by myself, and I thought the bees were in my room. And he was like, and then Dada came, and he made me feel so safe.

00:49:59 Rachel

Awww

00:49:59 Alyssa

Right? And I was like, okay, and so after I dropped him off, I called Zach and was like, I know last night for you was a total S show, and this is your three -year -old's recollection of last night, that he felt scared, and you helped him feel safe. So freaking cute. So cute. And I was like, this is why we do this and dang it, we're exhausted.

00:50:23 Rachel

Oh yeah. Yes.

00:50:26 Alyssa

It was one of those where I was like, okay, we're doing the thing.

00:50:30 Rachel

Yeah, you are. You're doing a great job. But when you're sleep deprived and you're playing musical beds, it's like, seriously? But then when they say stuff like that.

00:50:41 Alyssa

And you're like three year old, can you get it together because the seven -month -old is cutting her top four teeth and does not have it together.

00:50:47 Rachel

Yeah, she hates sleep. I'm so sorry.

00:50:50 Alyssa

She hates it. And the two of the four have cut through and the other two are like you can feel that they're like cutting through. So I have hope.

00:50:59 Rachel

Do you think any of it has to do with her FOMO? Because Noni was a terrible sleeper with high social connection needs too.

00:51:06 Alyssa

I think hers is actually, FOMO really connected to like proprioceptive needs. Like, she even, well, outside of the, like, aggressive teething that we're in right now, right now she just wants to have, she won't take a pacifier, and she wants to, like, suck or chew. And so she'll wake up and she'll, it's like a pain cry. And then when she starts to, like, suck or chew, then she'll fall back asleep. But outside of this time, if she has been, like, in bed with me and she cries and I just put my hand on her or I touch her, she falls back asleep. She loves touch and proprioception like I do. It's very regulating for her. I said to Zach, I was like, do you think now's a good time to get a dog and just put the dog in her crib? And Zach was like, this is the worst idea you've ever had.

00:51:53 Rachel

But when you get desperate for sleep, though, you'll literally do anything.

00:51:57 Alyssa

Get a dog and put it in your baby's crib.

00:52:00 Rachel

Hashtag safe sleep.

00:52:00 Alyssa

I just need any sleep. Yeah, but I think I think that's really what it is for her. And Sage is touch sensitive and has low proprioceptive needs. And so for him as a baby, he actually didn't like touch, he didn't like co -sleeping. It's just so different. Like he wanted his own sleep space and didn't want to be touched. And she's like, why aren't we touching? Yeah. And I actually, like I I said before, I don't hate co -sleeping as long as she's not nursing all night long. When she's nursing all night long, then I don't get sleep and it affects my mental health.

00:52:39 Rachel

Yeah.

00:52:42 Alyssa

So yeah, hoping that through these teeth, we're also about to go into two weeks of travel, most of which we'll all be in the same room. So that'll be fun. It'll be super fun.

00:52:52 Rachel

Oh, also I was talking to my sister about room shuffling.

00:52:55 Alyssa

Yeah.

00:52:56 Rachel

So I think I'm gonna take the smallest room upstairs with my family.

00:53:01 Alyssa

Does that work?

00:53:02 Rachel

Why not?

00:53:03 Alyssa

Okay, great. Stop yelling at me.

00:53:08 Rachel

I mean, my kids like to be shoved right as close to me as they can be anyway.

00:53:12 Alyssa

Sure.

00:53:12 Rachel

And we don't hang out in our room. And neither of them nap. So like,

00:53:16 Alyssa

Yeah, sure.

00:53:17 Rachel

We're good.

00:53:18 Alyssa

Okay. Yeah, whatever, man. We are going to be in that big room. And probably everyone maybe even Sagey in a bed. All the beds that are in there.

00:53:28 Rachel

Yeah.

00:53:28 Alyssa

Beaners and I'll be in a bed. Zach will be in a twin bed. Sagey might join a twin bed.

00:53:35 Rachel

So we have pretty, like, this has been like a slow sort of trajectory, but we've gotten to -

00:53:41 Alyssa

Hang on real quick for folks who are like, what are you talking about? We go on vacation together, Rach and I with her sister and brother. Her parents and Zach's side of the family, we go on vacation together every year for week and a bunch of us share a house. So that's coming up. Yeah.

00:53:59 Rachel

So how many kids will be in the house this year? Nine kids under the age of 10.

00:54:04 Alyssa

Yeah.

00:54:04 Rachel

10 or under.

00:54:06 Alyssa

Yeah. 10 and then Mila being the youngest at seven months.

00:54:09 Rachel

Yeah. And we usually have always had an infant or two. So it's always a balance of like, where are people going to go? How's everybody going to sleep? Is anybody going to sleep? One time we stayed in a house that didn't have walls that went up to the roof, to the ceiling.

00:54:25 Alyssa

I thought that's how you were going to die.

00:54:27 Rachel

Okay. So Abel was, what was he, four months old? Abel would have been described as a colicky baby. He cried all the time. He needed silence. Well, he actually needed white noise and darkness. And I walked into the house and I was there for not even 30 minutes. And I looked at Alyssa and said, this isn't going to work. I got to go home. And she was like, I need you to try for a little bit longer. And I did end up staying that year. But, um, ooof.

00:54:54 Alyssa

Yeah, it was touch and go there. The sound of white noise blasting through that house, because we also all have Hatch sound machines, which should be sponsoring the podcast, to be honest, because they should be sponsoring my life. We all have them. And you

00:55:09 Rachel

If you open the app, just see like a long list of sound machines.

00:55:14 Alyssa

When we're all in the same house on vacation. So funny. But because there were no full walls, everybody's sound machine was just raging. It was so good. I forgot about that.

00:55:26 Rachel

Man, I'm never going back.

00:55:30 Alyssa

It was also like a far walk from the beach. That was rough.

00:55:34 Rachel

It was a rough year, just in general.

00:55:37 Alyssa

That's true.

00:55:39 Rachel

For me mentally, one of the roughest. So what I was saying before is that Cody and I have slowly just, it has become, that I sleep in Abel's room and he sleeps in Nora's room like 95 % of the time. So as you're talking about being a co -sleeper, I have accidentally become, it appears to be a permanent co -sleeper.

00:56:04 Alyssa

Yeah, again, I don't mind the co -sleeping if she wasn't on my body all night long.

00:56:10 Rachel

Totally. And I wouldn't be able to do it if it was a nurseling. I can do it because Abel just sleeps next to me. He's not bothering me.

00:56:18 Alyssa

Yeah. I don't think it's Zach's favorite.

00:56:22 Rachel

That makes sense.

00:56:24 Alyssa

Working on that.

00:56:25 Rachel

Yeah.

00:56:28 Alyssa

So.

00:56:30 Rachel

Yeah. I've had to do a lot of stuff that wasn't Cody's favorite during parenting young babies.

00:56:35 Alyssa

Also not Zach's favorite for her to be screaming at him when he's holding her in the middle of the night and what she really wants is a boob. So...

00:56:43 Rachel

He's going to have to pick like his--

00:56:46 Alyssa

Correct

00:56:46 Rachel

Pick your poison, Zach.

00:56:47 Alyssa

What do ya hate less. Who are we chatting about today?

00:56:52 Rachel

Okay, we are chatting about Ashley Harris Whaley. I have to say that I loved this episode.

00:56:58 Alyssa

She's awesome.

00:56:59 Rachel

One of my favorite episodes I think ever.

00:57:02 Alyssa

What do you love about it?

00:57:03 Rachel

Her personality, her communication style, her authenticity. Just so easy to hang out with. It felt like I was listening to a friend.

00:57:17 Alyssa

Yeah. I felt like, I mean, this is the first time she and I'd ever chatted. We've DM'd before and followed each other for a little while. Been Instagram friends. But it felt so easy to just like dive into conversation with her. And I just, I've really realized about myself that I don't like small talk and I just wanna dive into the real stuff. And she so easily felt just authentic and real and we could have conversations about the real jazz and not just the like weather.

00:57:54 Rachel

Yeah, like tell me about your trauma.

00:57:56 Alyssa

Exactly.

00:57:57 Rachel

Yeah, that's what I always wanna know.

00:57:59 Alyssa

Tell me about your trauma or get out of here. Yeah.

00:58:03 Rachel

Yeah, I just loved her. And I think one thing that one of the things that she talked about pretty early on in the episode was that like, kids get to be curious and it doesn't give them license to be rude.

00:58:20 Alyssa

Yes.

00:58:21 Rachel

And I think like, for a lot of us, our default reaction to our kids saying something rude are inappropriate in public in regards to a disabled human is to like shush them, make it stop as quickly as possible, and then not necessarily like help them understand why that's not okay, how they can ask their questions that we're here to answer their questions, normalizing disabled humans as existing in this world and belonging in this world. And I think so much of that gets missed when we're just like, shh, don't say that.

00:58:58 Alyssa

Exactly. And so, I think what it requires of us is the ability to say, like, oh, yeah, you noticed that person. It's not kind to say that. And I'm happy to chat more about it with you. So to be able to acknowledge that, like, that's not kind. For me, on like a much smaller note, brings up the Sagey example. He didn't want people at our house and he them to leave. And I was like, you can absolutely feel that way and you can come and talk to me about it. It's not kind to say, I don't want them here when they're here. That's not appropriate. It's not a kind thing to do. It's exclusionary. It's othering, right? So like being able to help them laying the foundations for what is exclusionary, what does inclusion look like? How do we have conversations or get curious? Where's the appropriate place to ask that?

00:59:52 Rachel

Yeah, I think that's key too. I think I've shared on here before, and I know I've shared with you, that when Abel was three, we were in a cafe and we were at a table next to somebody and Abel very loudly was like, mama, why is that guy so huge? And I want my kids to be able to ask me questions and I don't want them saying things that are going to hurt somebody in public. And so it's like finding that balance of like, yeah, you can bring your questions to me and you can't say something like that in public.

01:00:29 Alyssa

Yeah. It's not appropriate. It's not kind. And also what they're seeing then is the disability and not the person, right? So helping them see the whole person, and also having a space where they can talk about the disability, right? That both/and. There was, I don't know what his diagnosis was, neurodivergent human in, my little brother's five years younger than me, so growing up, he had a child in his class who was definitely neurodivergent, but had other diagnoses that I'm not aware of. And he was pulled out for a lot of like special services and supports, but largely was included in the classrooms. And there was a culture of inclusion and support. I grew up in such a small town, right? Like my graduating class was 70 kids and our school was pre -K through 12 and like 12th grade. And I remember like fast forward to when they were in high school and like being at my little brother's basketball game and this child, this peer of his being in the stands and cheering and like being in the group with all the other kids cheering and being a part of it, et cetera. And the energy of inclusion and I had asked my mom, I was like, how do you think this was cultivated in a world where there's so much exclusion or shame or kids being made fun of? And she was like, this was from the time they were in kindergarten, there was a message of inclusion of like, oh yeah, this is who he is and how his body works. Also, he's a person like he has feelings about these things like, this comes up for him here, like, you are going to be in conflict with him. And like, we're going to just like all these regular everyday things that they're going to experience with him because he's a human. And she was like, I think that his teachers, my little brothers, like teachers along the way, did a really good job humanizing and seeing beyond the disability, seeing the human.

01:02:55 Rachel

Yeah, that's so key. And I think that part of, and Ashley mentioned this too, is like for a really long time, the narrative around disabled humans was actually like created and driven by able -bodied humans. And you asked her like when she noticed a shift or like how did the shift happen? And she talked about the internet and people who are sharing their lives and experiences on the internet for others. And I think that that helps so much with allowing people to see the person is not just their disability, they are a whole human who lives with a disability, but there's so much more to the story than that. And I think that a lot of our discomfort with being open and honest with our kids about disability is because we are still living in a place where most spaces are not equitable. And although the narrative has started to shift as a whole, as a culture, I think we still very much other humans who are disabled. So it's uncomfortable to then be trying to respond in public when your child says something that's rude or othering or unkind. We don't have a rubric to pull from for that in the moment response.

01:04:20 Alyssa

100 % agreed and I think it's also like still very much coming from an ableist lens. Heather Avis from The Lucky Few shared a post. She and I had an in -person real -life conversation that she shared a post not long after that just like I have continued to like dive into in my head and around the conversation of disabled humans around what they can do, right? And how that's still an ableist lens. We're saying, how are you the same as me? We're trying to find what they can do instead of saying, you're worthy of respect and existence and love and all the things just for having heart in your chest and air in your lungs.

01:05:14 Rachel

Yeah, like your value as a human isn't contingent on what you're able to do.

01:05:18 Alyssa

Correct, correct. But we still live in a culture where I don't think that that's embodied.

01:05:28 Rachel

I agree. I think that our children, I mean, us too, but I'm talking about how we're teaching our kids our children are getting messages in the media and how we respond and how they see other humans respond, that is still like this negative connotation with disability. And that I think we have to be intentional about how we shape our response because it's really easy to reinforce that.

01:05:57 Alyssa

100%. Yeah. And I guess like that's where I like find myself now. It's like, All right. Am I doing the response part correctly? I want to make sure the person in front of me is seen as a human for my child and that my kid can still ask me questions and that we can talk about how everybody's body and brain looks different, works different, needs different things. And this is how their body works. And this is what their body needs to move or to stay alive. Like, yeah, this person needs an insulin pump or whatever. This is how their body works and this is what their body needs, not from a place of like, here's the whole picture. This is what it would be like to be a whole person. And then there's these pieces that aren't working correctly, I think is often how it's been framed.

01:06:58 Rachel

I agree. And that's problematic.

01:07:03 Alyssa

Yeah.

01:07:04 Rachel

And it's so easy to perpetuate if you're not being intentional.

01:07:09 Alyssa

Yeah, I think we see it from the neurotypical lens too. Like, neurotypical is if you are functioning the way we should function. Neurodivergent is if things aren't happening correctly. And it's that shift of like, no, what does your body need to thrive, to survive, to stay alive, to move, to function?

01:07:35 Rachel

Yeah, it's that idea that there's one correct or right way to be a human, which obviously goes beyond disability. That could be a whole podcast episode. It could be a whole dissertation. Yeah. Yeah. This is definitely an area of growth for me. I feel like there's so much more that I could learn so that I could be a better advocate and ally. So I loved listening to this episode, just hearing her perspective and hearing what she shared, like the practical things that she shared that we can be doing with our kids as they're growing up to start to rewrite some of the narratives.

01:08:27 Alyssa

Yeah, I agree. And I for myself was like, I need to expose my kids to more diversity in ability in their everyday life, right? Like in books where it's not like, here's a book about this person's disability, but just that disabled humans are featured here. In Daniel Tiger, Chrissy is disabled and there's at one point where they like are at a playground and she can't access all the playground equipment and they talk about like, how can we rebuild? They rebuild this playground so it's accessible for her. Local to us, recently a playground was just built, I guess renovated. It wasn't really a playground before, so built. And it's a fully accessible playground. And when we got there and Sagey was like, oh, why does this slide look like this? Or why does the merry -go -round look like this? Why is this swings? And we were talking about it and he was like, oh, like Chrissy, so Chrissy could play here. And I was like, yes, like Chrissy. Chrissy could play here. And he recalled that episode and connected it. And I was like, those things go so much farther than I think we often give them credit for.

01:09:41 Rachel

Yeah, I think too, it makes me think of like, for a really long time, the only time that I would see media that was representing queer families, like the storyline was about being queer, instead of like just queer humans living. And I think it's often the same with disability, like the storyline or the plot has to center the disability. And it's like kids need to see disabled humans just livin' life, engaging in the world, just to normalize that their whole life and their whole self is not just their disability.

01:10:19 Alyssa

Absolutely. I was listening to a podcast episode the other day, and a similar thing was brought up about the like lead male actor of any sort of like romantic comedy or the like lead male that you're supposed to think is dreamy was always a very particular white male. And this person being interviewed is Asian and he was saying like he was offered a part in a film that was pretty big film and he kept turning it down because he was like, no, I'm not that character. And he was like, I couldn't see myself in it because I'd never seen that. And it took the director being like, no, you are that character. Like, you get to be that character. And he was like, other people had to believe that I could be it before I could be it because I'd never seen it. And yeah, just that like representation component and how key it is for then what we believe to be true, that this is what the lead male actor should look like. This is what a hot female body should look like, right? That all then becomes so ingrained in us. And then we look at folks who are disabled and it becomes this othering rather than, oh yeah, that's how their body works. Instead of a normalization of.

01:11:45 Rachel

Mm -hmm. Yeah. Instead of being like, yeah, they belong in this space.

01:11:48 Alyssa

Exactly. What a gift to get to learn from Ashley.

01:11:54 Rachel

It was, I mean, one of my all -time favorite episodes and also made me really grateful for, my kids go to a really small school and there are definitely some downfalls to that. But one thing that I love is that there actually are no like, I mean, there's the occasional pull out. But for the most part, students with disabilities are in the classroom and they have a TA available to help them in the classroom, but for almost all activities, they are with their peers. And I'm really grateful for that because otherwise my kids would not be having like any face -to -face, in -person interaction with disabled humans, just because they're not in other spaces of our lives in this moment in time. And that normalization and humanizing of their peers who live with disability, I'm so grateful for.

01:12:55 Alyssa

Yeah, I love that. And I think we often, I think systemically, we only have conversations about people's bodies and how they work and how they function when they're different from ours. And I think it's a huge downfall. So we were even, I've been trying to find pockets of funding here in the state of Vermont for Vermont -based programs that have access to accommodation tools that aren't necessarily for a child who has an IEP or an IFSP, but just generally speaking, oh yeah, this child might benefit from having noise -canceling headphones, or this child might benefit from having a sit -and -spin available, or if we had an egg chair that has the thing that can come down where they can be enclosed and have a break from stimuli, and we can't find pockets of funding unless you have diagnosis. And I think that the problem here, I mean, there are a few problems here, but one of the main problems here is that we're saying, oh, we're only going to talk about your body and what's going to help your body if you have a diagnosis instead of, yeah, everybody's body needs different things to function and thrive. Here are some things that might be helpful for you. Here are some things that are helpful for them. Here's what's helpful for these people.

01:14:23 Rachel

Yeah, it's that normal versus abnormal dichotomy that we're stuck in. Instead of just saying like, yeah, we all have different needs. Every human does and not all of it involves a diagnosis and they should still be able to access supports.

01:14:41 Alyssa

Correct. And then everybody wins then when we can all just be able to talk about our bodies and learn how they work. And I mean, Sagey will tell you, he's three and he'll I'll say like, oh yeah, it makes mama feel sick if she goes on the swings, but it helps my body feel calm. Because we just talk about our bodies and what helps them and what supports them and that we're all different. And I think that that would be helpful in also like humanizing all people that like their body, we're not just gonna talk about their body because it's disabled.

01:15:22 Rachel

We have a long way to go.

01:15:25 Alyssa

Long way to go. Also, if anyone listening works on the state level in Vermont and has a pocket of funding I haven't found, holler at your girl. Like, can we get noise canceling headphones for this? And then it's like, yeah, totally. You can get that. If the child has an IEP or an IFSP, then you can get an accommodation for the classroom. Here's the grant you apply for. What about just for the general, every classroom being sensory supportive?

01:15:51 Rachel

Also, the other like problematic piece of that is that like works under the assumption that the parents have the time, resources to make the additional appointments, get the referral, they're going to be waiting for that meeting. It's like, how many hoops does a parent have to jump through to get their kids supported? You know?

01:16:13 Alyssa

Totally, totally. Yeah, a lot of problematic parts of this. And I'm sure, not to call Vermont out, I'm sure it's not limited to Vermont.

01:16:21 Rachel

It's totally not.

01:16:23 Alyssa

Its just a problem I've been working on here. Yeah. Well, this is such a rad conversation and I am jazzed. Ashley's gonna be joining us for the summit next year too, to be able to provide a workshop for early childhood educators. I'm super stoked about that. If you're an ECE tuning in, please reach out to us and let us know. Go to seed.and.sew on Instagram and comment on the reel from this episode and let us know what you want to learn more about in terms of how to support, whether it's how to support disabled kids, how to create an inclusive environment, et cetera. What do you want to learn more about from Ashley at the Summit? And Ashley, thanks for being rad.

01:17:13 Rachel

I'm so excited that she's joining the summit.

01:17:16 Alyssa

Me too. So needed. So grateful.

01:17:19 Alyssa

Thanks for tuning in to Voices of Your Village. Check out the transcript at voicesofyourvillage.com. Did you know that we have a special community over on Instagram hanging out every day with more free content? Come join us at @seed.and.sew S -E -W. Take a screenshot of you tuning in, share it on the gram and tag @seed.and.sew to let me know your key takeaway. If you're digging this podcast, make sure to subscribe so you don't miss an episode. We love collaborating with you to raise emotionally intelligent humans.

Connect with Ashley:

Instagram: @disabilityreframed

Website: https://www.ashleyharriswhaley.com/

Order the book: I Am, You Are: Let's Talk About Disability, Individuality and Empowerment

Other children's books Ashley recommends:

When Charlie Met Emma

Awesomely Emma

What Happened to You?

You’re so Amazing

Mama Car

Connect with us:

Instagram: @seed.and.sew