MENTIONED IN THIS EPISODE:

• Beyond Inclusion: Raising Anti-Ableist Kids by Carrie Hahn

00:00 Intro
03:14 Myths About Disability
05:33 Talking About Disability in Public
09:05 Challenging Assumptions of Incompetence
14:32 Making Disability Normal in Play
19:08 Turning Conversation Mistakes into Learning
23:38 Practical Tools for Caregivers

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WATCH this conversation on YouTube: Amy Julia Becker on YouTube

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Note: This transcript is autogenerated and does contain errors. Please check the corresponding audio before quoting in print.

Amy Julia Becker (00:06)
Hi friends, I’m Amy Julia Becker and this is Take the Next Step, a podcast for families experiencing disability. We’ve teamed up with our friends at Hope Heals to bring you weekly conversations with fellow parents, therapists, and disability advocates about practical ways to cultivate a thriving future for the whole family. Here at Take the Next Step, we see your family as a gift to our society and to your local community. Your family matters.

Your child matters. We need you among us. Today I’m talking with Carrie Hahn, the author of Beyond Inclusion. I love Carrie’s matter of fact way of talking about disability. As the mom of two sons with different disabilities and as an author and speech language pathologist, Carrie has so much wisdom to offer in navigating what I find sometimes to be tricky, sometimes cringy, sometimes outright hurtful conversations.

that many of us find ourselves in when we go out into the world with our kids. How do we handle people who ask invasive questions or speak to us as if our children aren’t present? Is it okay to make mistakes when talking about disability? How do we protect our kids and also take the risk of being in community? We are talking about all this and more in today’s episode. I’m so glad you’re here with us.

Carrie, thank you so much for being here with us today.

Carrie Hahn (01:34)
Thanks for having me.

Amy Julia Becker (01:36)
So you are a pediatric speech language pathologist, an author, a speaker, and a mother of kids with disability. So for all of those reasons, we are really grateful to have you here on this show. Would you just start by introducing us to you and your family?

Carrie Hahn (01:51)
Yeah. Um, so thanks for having me here today. I am one of four. We have a family of four and, um, my husband’s name is David. And then, um, I have two boys. Um, my older is 14 and he has a pseudonym, um, in the book that I wrote. So we’ll call him Pete. Uh, he’s 14. He’s an eighth grader and he has dyslexia and ADHD. And my younger son, who we call Dan.

is almost 13, he’s a sixth grader, and he has multiple disabilities. He has a genetic condition that causes blindness and low bone density, and he has some pretty significant mental health challenges as well. We adopted him when he was four and a half, and he had an interesting start to life. And so that is our family.

Amy Julia Becker (02:43)
Great. Well, thank you. And I figure that they may come up as we speak to each other. You’ve written a book, which you’ve mentioned, called Beyond Inclusion, which I really appreciated ⁓ when I first read it. And I appreciated looking back through it just in preparation for this conversation. You give really practical tools for parents, specifically, at least what I took out of it, ways to speak into some of the hard moments that we might experience with our kids with disabilities.

And I thought we could begin by asking, or I could begin by asking you, what are some of the common misconceptions of disability that we encounter as parents? And how do those things actually affect our families?

Carrie Hahn (03:24)
Yeah, I mean in researching for my book, you know, I came across numerous forms and but I narrowed it down to 15 in the book. I feel like almost all of them happen at some point, but there are a couple that I feel like happen pretty regularly. Okay. One of them, probably the one that happens the most frequently, especially if Dan is around because he has a visible disability, is the misconception

that his private information is kind of up for anyone who wants it. pretty much always someone will ask about his blindness one way or the other. Is he blind? That’s usually where it starts. And then it might go on to, has he ever been able to see? Does he see anything? How did he become blind? And he doesn’t like it. I think he wants to be in control of his own story. If it’s going to be talked about, it’s going to be his initiative.

flabbergasted me how often that happens because we can’t go anywhere outside in our little small community of people that are close to us and never comes up obviously. But if we step outside of that little community, it is almost something that we can guarantee will happen if we’re out at a store or at a park or somewhere. So that surprised me how often that has happened. And then the other one is ⁓ that if I just am casually chatting with someone and his disability comes up,

It’s the disability as a tragedy where I get a sad face and I get an aww or that must be so hard. And so that’s another misconception that kind of tends to show up pretty regularly.

Amy Julia Becker (05:03)
Can we maybe hone in on those two examples? How do you respond? And obviously it’s a little bit case by case and situation by situation. But to take that first example, which we’ve also experienced, I’m hearing from you both the lack of understanding that Dan’s story is his story, but also the talking about Dan with Dan present instead of talking to Dan.

I would imagine both of those things can kind of go a little haywire. And I’m curious how you handle that both in the public space and also with Dan, just as his mom, maybe outside of that public space.

Carrie Hahn (05:44)
Yeah, those are happening all at different times. Dan and I are often having conversations at home away from the situation about this very situation because it is triggering for him. And so he and I have had to have conversations about, this will happen. We know the only way to avoid this happening is us never going anywhere. We know that it could happen anytime, anywhere. We don’t know when it’s going to happen. So we need to come up with a plan or when it does happen.

what should we do? And I want to honor his wishes. So I’ve told him that I won’t share anything that’s his personal information unless he wants me to. But then he and I have to negotiate a little bit about ⁓ me just providing an answer and education about blindness in general, because sometimes the people that are asking are people who are wanting to learn. And we know that there’s two sides to the coin, right? There’s people, if you don’t know,

then you might need to ask to get information, ⁓ but then the asking can feel problematic. And so he and I have come up with a plan where in the moment I will say, do you want to be here for this or would you like to go find somewhere else to sit while I talk to this person? You know, where I’ve told him when I’m talking to them, I’ll just be talking about general blindness. I’m not going to be sharing your details. ⁓

And then he gets to decide if he wants to step away and do something else or if he wants to be a part of the conversation. Usually he chooses to do something else because he just doesn’t really care to talk about it. And I think that he feels like there’s a vulnerability there. think it’s also he’s almost 13. And I’ve seen other people that this age especially sometimes can be a time where it’s even that adds a layer of difficulty to the situation.

Amy Julia Becker (07:35)
I think that given the, have a 14 year old and having just been in a 13 year old space and she’s typically developing, but cannot imagine how she would respond to people in her presence asking me questions about her hair. I mean, questions about anything. would just be really, really painful and hard. So I appreciate that so much. How about the tragedy piece? Could you speak to that for a minute in terms of that tragedy, like disability? Like how does that come up and how do you handle it?

Well…

Carrie Hahn (08:05)
⁓ When there are little kids around, it can happen even when Dan’s around. But a lot of times when it happens is when he’s not around, thankfully. Someone might go, that’s sad. And I’d say, actually, it’s not sad. This is blindness. This is how he is. And we love him the way he is. And just something really basic like that. And then just trying to move on from it. I’m gonna keep it simple and not too emotionally charged. ⁓

very matter of fact and then just kind of let them sit with with that.

Amy Julia Becker (08:37)
I

appreciate that. And I like the idea of almost preparing an answer ahead of time. The fact that, you know, because of the age he is, him being a part of that preparation even. that sense of like, yeah, I wish that were never said at all. But if it is, let’s have a response that contains the problem rather than kind of allowing it to fester, it sounds like to me. The other piece of what you wrote about in your book that I wanted to make sure to talk about was the presumption of incompetence.

And I thought I might ask you just to spell out what that is, the presumption of incompetence, but also, and this may not, I don’t know if this still happens for you with Dan, I know it did when he was younger, but can you talk again about how that’s kind of played out in your life? We’ve certainly, and continue to see that with our daughter Penny, who is 19 and has Down syndrome and is quite competent in many ways, but the presumption of incompetence is present.

Carrie Hahn (09:28)
Yes, it runs deep. ⁓ The presumption of incompetence basically is this idea that people carry that if someone has a disability, if they’re disabled, that they are incompetent just because of disability. So the interesting thing about it is that it’s not, and this is what really gets to the crux of it, that it is not something that has been given any conscious thought. It’s a misconception that’s just part of our culture because sometimes people will

presume incompetence about a disabled person that has nothing to do with their actual disability. You know what I mean? Like people who use a wheelchair, people might speak loudly to them, you know? And if they were to stop and think about it, they would go, well, these things, that doesn’t make sense. But making sense isn’t actually a part of some of these ableist notions. There isn’t really any sense to it. It’s just kind of something that is out there that…

is just kind of coming from all directions. You crack the door open a little bit where people start to pick apart and go, wait a second, that actually might not be true. So ⁓ it does come up ⁓ with Dan. ⁓ I think sometimes it’s because he’s blind, it’s almost like people need to just run around and do everything for him. And so I have to sometimes just kind of butt in and go, ⁓ hold on a sec, he actually can do that. The interesting thing, this goes along with

disabled people being their own individuals with their own stories and preferences. Dan actually doesn’t care if people think he’s incompetent because he loves when people do things for him. That’s part of his story. So that’s another layer that I have to figure, I have to balance. There is like some autonomy in that for him and sometimes letting him get away with letting people cater to him and do things for him that he can do himself, but also then calling it out sometimes when it’s problematic, like for example.

certain environments where the people he is surrounded by need to know that he can do X, Y, and Z. So it can be kind of a tricky thing ⁓ to balance and it kind of, you know, depending on the person, they’ll all have their own feelings about it and their own reactions to it. know, Dan doesn’t really do anything to try to prove his confidence. But ⁓ I think the other extreme of that is that people will spend a lot of time and energy trying to prove.

their competence and their worth when they shouldn’t have to. You know, that a lot of disabled people feel inclined to work harder, to never make mistakes, to show up as like the best person, the best ambassador, the best, you know, disabled person you ever did meet so that I can be a representative for the whole community and make everyone know that we are worthy. And that’s not really fair, you know? So it, the presumption of incompetence comes loaded.

And it can manifest in different ways, and it can also ⁓ affect people in different ways and shape their trajectories and kind of how they show up in the world too.

Amy Julia Becker (12:34)
Yeah, and it’s kind of interesting because I think our typically developing kids, there’s probably more presumption of competence sometimes than there should be. In the sense that all of us as humans have competencies and needs. And it’s almost like this imbalanced understanding of each of our humanity in the way that we assume things about one another and how hard it sometimes can be to even express like our need for

something in a social situation, especially with someone who doesn’t know us. And I would think, especially with Pete, with your older son, in terms of having kind of invisible disabilities, the opposite might sometimes be true. As again, it sometimes is with me, you know.

Carrie Hahn (13:19)
Exactly, yeah, that definitely was a thing for him that like when we were first trying to figure out what was going on with him, he was presumed more competent than he was. And then it was there were other stories then that he was telling himself and that other people were inadvertently telling him like that he just wasn’t trying hard enough that we weren’t making him read enough at home that he wasn’t practicing enough, know, lots of lots of things that

reasons why he wasn’t rising to the challenge ⁓ that we’re actually going toward the side of we’re expecting too much, like we’re presuming too much confidence. And I think you’re right, that happens a lot, like, because we tend to want to lump people into groups, and we don’t want to individualize things like we should. ⁓ Individualization would show us all this variability with competence in all these different areas, you know, that would be just

Each individual has their own strengths and their own challenges, but because we like to separate things and keep them neat and tidy, we either presume over-competence or we presume that there’s incompetence. So yeah, that is a really good point. And it is interesting how it has worked itself out in our family.

Amy Julia Becker (14:33)
things in your book that I also really loved is ⁓ you just wrote about including disability as a normal part of our children’s play and I wanted to ask you what that might look like and why it might matter again both for typically developing kids and for kids with disabilities.

Carrie Hahn (14:48)
Yeah. ⁓ So I have, I’ll just, the best example I can give right now, and that gives me so much hope is we have neighbors that live across the street from us and they have a five-year-old and a one-year-old. And I’ve had the chance to go over and like babysit for them from time to time. And one day I just went over to play with the five-year-old because she wanted me to come play with her for an hour. Of course, ⁓ they have toys and books in their kids. Neither one of their kids have a disability.

they have toys and books in their kids’ that represent disability. ⁓ like, she has, ⁓ my little neighbor has a doll that has a disability. And so I was very curious to kind of see her doll’s role in the play. I was just curious, so I just left it open to see. And the doll’s an auntie, and she has a name, and she has a backstory, and her disability wasn’t even part of the story. And that’s a triumph, not because…

It’s that we want to avoid talking about disability. It’s not that disability is something shameful to be talked about, but disability becomes the center of a person’s identity sometimes, whether they want to or not, right? So a lot of times, you know, if disability is not properly represented and then you do have, you know, like,

a toy or when a company releases a new toy that has a disabled character. It’s a whole thing that’s like, my gosh, look at this. And it’s great that they’re making these toys. I don’t want to like, you know, minimize that, but ⁓ it’s also great to just make toys that represent disability and that we don’t have to have a, it doesn’t have to be a grand unveiling. Like it’s important to people who are disabled to see themselves represented. Right. But it also can just, we can then.

go on and have plenty of those toys and people can buy those toys for their non-disabled kids so that when the kids are playing, it’s a community of toys that are disabled and non-disabled. And so, you know, even my little, the little neighbor’s baby books, I was looking at his books and one of his books was a book called Baby Faces and the cover, the baby on the cover had Down syndrome and wasn’t mentioned, you know what I mean? This book was not a disability.

This was a baby face among faces in a community of faces. And that’s what I think we need to try to get to, you know, that it doesn’t have to be disabled, non-disabled, that like, if we include disabled, non-disabled toys, play, books, then disability starts to just become part of, it has its place as a normal part of the human condition and not this separate category, you know? So, ⁓ but with my own kids,

Like this was before this was on my radar with Pete when he was like three or four. He had a Power Ranger toy that the bottom half of one of its legs were missing. And we, you know, we’re looking for it and couldn’t find it. And so then it was like, well, what are we going to do? I don’t know if it was on my, if it was a conscious decision or not, but it was, we found something that would work and we made him prosthetic. And then that gave me the opportunity to.

tell Pete about prosthetic limbs and about all the things that people who use them, what they can do and that they can do all the things and that they’re Olympic athletes. ⁓ so then now that’s definitely like if the toys, you know, have something different about them, it’s kind of a little bit bigger of a thing that we can, you know, that we can talk about. ⁓ But I love the fact that stores are just selling toys now because

that’s much more intentional. ⁓ And I love that, that it’s so much easier to find them now. It’s gradually getting easier and easier, I think.

Amy Julia Becker (18:40)
Yeah, I don’t think when my kids who are now all teenagers were younger, there was that type of representation. And so for me, it was trying to use, and I still do this too, but like language that would normalize and kind of neutralize disability. to have the, especially for young kids, to have the physical manifestations of that normality and neutral experience of humanity seems like it’s really, really important and positive. Yeah.

Other thing I wanted to ask you about was ⁓ mistakes. ⁓ People are going to make mistakes when talking about disability, when asking questions. ⁓ And we might do that as parents. I’m sure there plenty of parents listening to this podcast who are like, yeah, I’ve kind of done some of the things you just said, whether that’s about my own child or about someone else’s. And I think we all sometimes feel like we’re just fumbling through these spaces where we want to have ⁓ real connections with families.

and people and we’re really afraid of making mistakes. So how do you handle those mistakes and what kind of encouragement might you make for some of us who are like, gosh, that’s me. You know, I don’t use the right language all the time or I don’t and I’m afraid of getting it wrong.

Carrie Hahn (19:53)
Yeah, I mean, that’s also me. One thing I want to make sure I explicitly say is like, think there’s like an ongoing quest to do right and to like get things right. And that the reason we want to do that, I think deep down is because we don’t want to hurt people, you know, like that’s what’s at the core of why we did it right is that we don’t choose to be hurtful. And so that quest is, you know, part of it is you grow and you learn and you stick your neck out and you try something and maybe you get it wrong.

⁓ but I’ve been lucky enough to be in some spaces that have taught me how to acknowledge that I was, that I made a mistake. ⁓ and just saying it, that’s the hardest part sometimes is just saying, ⁓ I messed up. I didn’t word that the way I wanted to, or I think I said that in a way that might’ve been hurtful. ⁓ I am so sorry if I hurt you. I, and then the next piece of that is I’d like to do to figure out how to do better.

And ⁓ so I think when we are talking to people, ⁓ if they happen to get it wrong or make a mistake, I think we can gently say, actually, you know, and just very non-confrontationally, very respectfully, give a little bit of information and then even just saying, if you’re interested in learning more, and then maybe offer a resource, one of your favorite resources. You know, I have my favorite resource that I wrote myself.

⁓ that I tell people, I wrote this book. And the whole reason I wrote it is because I know so many people in our life that would explicitly ask me and say, I want to make sure to get this right for him. But how do I do that? And so I know that it’s something that people want. And so you can offer a resource and then if they’ll do with it what they’ll do with it. Because what they do with it is not up to us. They’ll either choose to look into it.

because they want to learn or it was maybe just more of a social, I’m going to apologize because I think I got it wrong, but I don’t really actually care that much because that’s true too sometimes, right? I think all we can do is, you know, mention it. I especially am motivated to mention it if my kids are around because I don’t, I don’t like the idea of certain things hanging out there anyways, but especially if my kids are there. I want Ian to know, nope, that’s not true.

You know, ⁓ but also one more thing I sometimes like to do is say something like, that’s a really common misconception. You know, you’re not alone. You’re not alone in thinking that. A lot of people think that, but actually this is what the truth is. If you’re interested in learning more, you know, here’s this resource or let me know. Maybe we could chat more sometime, you know, just kind of opening it up, offering a resource and then kind of the balls in their court.

Amy Julia Becker (22:42)
Yeah, thank you. That’s really, really helpful. I was ⁓ talking with a young mom of a baby with Down syndrome and she was saying that she had many encounters where people were referring to her child as a Down’s baby. And she said, do I correct them? Like I’ve only just learned this language myself to say baby with Down syndrome, but it still kind of hurts my heart every time I hear it. And ⁓ I said, you know, kind of similar to you, you might just want to like rehearse some lines behind the scenes so that it’s not quite so emotionally fraught.

And so that you can gently say, you know, one thing I’ve learned in the few months that I have been a mom to this child is this type of language. If that’s something you’re able to incorporate when talking about her, I’d really appreciate it. Like just trying to think how would I want to be on the receiving end of those types of messages and, you know, can I practice that? So that kind of brings me back. I want to sum up some of the things that you have said that I think are so helpful and actionable for us. I wrote some down. The first was just to

come up with a plan when we’re outside of those interactions with the other people, or maybe asking questions about us or our families or our kids. And then I also loved your thoughts of like talking in general, rather than sharing kind of private details about our children. So I can talk about Down syndrome without having to kind of betray Penny’s privacy, which I think is a really helpful idea. And then,

You also mentioned presuming competence and we talked about presuming need. There’s just a way of kind of assuming some things as we go into the world and then including disability as a normal part of play, of conversation, of our human lives. Those are all some things that I wrote down from what you just had to say. Is there anything you would like to add just as a sum up for some parents who might be looking for ways to take this conversation out into their everyday life?

Carrie Hahn (24:32)
I think the only last thing I’d like to say is, you know, some of the best things that we can do is just to love on our kids out in the open. Love on them and ⁓ delight in them and creating in our own families what we wish was out there in the world so that at least our kids know that it’s possible and that when we live like that and we name the things that happen out there or the misconceptions that are out there and we talk about it with our kids.

then our kids will be able to recognize when it happens, our kids will go, that’s actually not true. Because that’s important for our kids to know that misconception is not true so that it doesn’t get too far in there. We can’t control the fact that sometimes it will, but by naming it, calling it out, ⁓ we can make sure that at least they won’t hear it and internalize it any more than what we actually have influence over.

So yeah.

Amy Julia Becker (25:34)
Yeah, we want their foundation to be one of belovedness and delight. And they may not get that every time they step out the door, but if they have that as a foundation from the home, it can go a long way. Thank you again for being with us. I’m so glad we got to learn from you.

Carrie Hahn (25:43)
Yes.

Thanks so much.

Amy Julia Becker (25:54)
Thanks so much for joining me here at Take the Next Step. This show is produced in partnership with our good friends over at Hope Heals, a nonprofit that creates sacred spaces of belonging and belovedness for families affected by disabilities to experience sustaining hope in the context of inter-ability communities. Before you go, I wonder if you could think of someone else who would benefit from hearing this conversation with Kerry Hahn. ⁓

If you have that person in your life, would you take a minute to send them a text or an email or whatever other kind of message you want? Just tell them that this episode is for them. Next week, I’m talking with Sho Baraka, hip hop artist and father. He and I are going to talk about his experience as a dad and a husband with two autistic sons. I’m also looking forward to talking with psychotherapist Nero Feliciano. She is the author of All Is Calm-ish.

which is a book about how our families can navigate the holiday season. We’re going to talk specifically about how families affected by disability can navigate that season with both peace and purpose. We have two more episodes, in other words, in these upcoming weeks before we take a break for the holidays. As always, you can send questions or suggestions my way. Just tap the send us a text link at the end of the show notes or email me at amyjuliabeckerwriter at gmail.com.

I want to thank Jake Hansen for editing this podcast and Amber Beery, my assistant, for doing everything else to make sure that it happens. I hope you leave this time with encouragement to start with delight, connect to community, and take the next small step toward a good future for you and your family.

Take the Next Step is produced in collaboration with Hope Heals. Hope Heals creates sacred spaces of belonging and belovedness for families affected by disabilities to experience sustaining hope in the context of inclusive, intentional, inter-ability communities. Find out more about our resources, gatherings, and inter-ability communities at hopeheals.com. Follow on Instagram: @hopeheals.