Ep. 123: “Special Needs” + Why Parents Need to Drop the Term w/ Kari Harbath and Disability Activist Hannah Setzer

Episode Transcript

Hannah Setzer  00:00

I think society just has ingrained in us so badly that, like, disabled people have no life, and no anything. That it doesn’t equate to being both “disabled and,” it just ends with disabled.

 

Madeline Cheney  00:22

Hello, you're listening to The Rare Life. I'm your host, Madeline Cheney. I'm super excited to give you a conversation all around the verbiage we use to kind of categorize or describe our children. In this case specifically, special needs versus disabled.

 

Now, some of you, especially those of you who are newer to this life, or those who aren't on social media a ton, may have no idea that this “Do we say our kids have special needs or disabilities?” is even a thing, let alone that it's actually a pretty controversial topic.

 

So, I think, like, most of us start out using the term special needs. And then at some point, we learned that the preferred term in the disability community is, you guessed it, disability. A lot of us shift our verbiage over to reflect this, while others of us continue using the term special needs as we did before, maybe with a bit of an eye roll. And this conversation is all about the why – why disability is the preferred term, and why that matters. Or at least it should, to us as parents.

 

To tackle this topic. I'm joined by a disabled adult and another nondisabled parent of a disabled child, and I'm so excited to introduce them. But first, I know that conversations like this tend to feel a bit like being policed, which is absolutely not the goal.

 

During this conversation, you will probably hear some stuff that you agree with, some stuff you straight up don't, and then other things that you need some time to process and decide how you feel about it. And that is absolutely the point.

 

I hope that you see things from a new perspective from this conversation, and then figure out exactly how you feel. I didn't agree with every single thing said in this either, and it definitely helped me figure out exactly just how I feel about things.

 

I think in our society, there's this push to surround ourselves with only people that we agree with, and everyone else is deemed the enemy and wrong. But I encourage all of us to create space for differing opinions, both that of others and our own. They all deserve space.

 

Disabled people have a lived experience that is different and unique from the lived experience of us as parents. Both perspectives are very valid and valuable. Okay, let me introduce you to our rock star guests and then we'll jump in.

 

Kari Harbath is mom to Sloan, who has a medically complex three-year-old with profound deaf blindness. And that's actually how we met, at an annual conference for parents of deaf blind kids. I actually interviewed her way back in season one when the podcast was just starting out in episodes 10 and 11. And then shortly after that, her husband Aaron tragically passed away.

 

She talks a lot about life after loss on her Instagram page, @kariandsloan, and I just love her realness. She's done a lot of learning and unlearning from the disability community, and I knew that she'd make a great participant in this conversation. Kari is a lover of Real Housewives and of doing community work in her hometown of Ogden, Utah.

 

Hannah Setzer is our other rockstar guest. She is a writer and disability rights activist and works to normalize disability within the fitness world. Her handle on Instagram is aptly named @feedingtube.fitness, and I'm sure many of you know and love her from there.

 

She lives in Virginia with her husband and four adopted sons. She owns a small business making and selling elderberry products, which I loved reading about in her book, I'll Pray for You. It's such a fun read in which she shares a lot about her life growing up with medical complexities, and just life in general. Hannah is hilarious, and she had me giggling to myself as I read her book while in my nightly bubble baths. So, if you want to get a copy for yourself, there is a link in the show notes.

 

Hannah is a lover of her cat Meatball, and of moving her body. And one quick note before we jump in. Because of the way Hannah's disabilities affect her facial structure, she can be a little difficult to understand at times.

 

And because I didn't want anyone to miss a single word of what she has to say, we created a voiceover version and a regular version of the episode so you can just pick whichever you prefer. You're currently listening to the regular non-voiceover version. If at any time you decide to switch over, you're welcome to do so. We also have a video version with subtitles on YouTube linked in the show notes if that's your cup of tea. And as usual, we also have the transcript available on the website.

 

All right, let's dive in. Hi Kari and Hannah, welcome to the show.

 

Kari Harbath  05:24

Hi.

 

Hannah Setzer  05:26

Hi!

 

Madeline Cheney  05:26

It’s so great to have you guys. I'm so excited to talk about this topic, and I am a fan girl of both of yours. And so, I just think this is gonna be a lot of fun.

 

So, I would love to start out – Hannah, with you talking about, kind of, let's just dive right in with the term “special needs.” I guess I'm also using that term. I know there are other terms also, like differently abled, and handi-capable, which actually is one I've never heard, but I read it in a book. Some people say handi-capable, or just different kind of cutesy terms like that.

 

So, I'm kind of like lumping those all together when we refer to special needs, right. So, Hannah, if you could share with us, you know, as the disabled person in this conversation, why special needs is not the preferred term for many of the disabled community?

 

Hannah Setzer  06:14

So, I’m just one person, I'm not the disabled spokesperson. But obviously, disabled is not a bad word, and society just acts like it is.

 

And to be very honest, growing up, my parents never called me disabled; they didn’t call me anything. I went to special ed preschool because of my medical issues, and for the rest of my life I was in public education. Just regular classes and life

 

And my parent always talked about, “Oh, you just have a medical condition.” They never used the term disabled, or anything else. And, so to be honest, I didn’t have a ton of experience with it.

 

And honestly, until I went back to school to get my masters in social work, and I took classes on disability, and disability history, and disability rights, and I honestly had a pretty hard time. Like a come-to-Jesus moment, where I was working with disabled clients that had to like... I like didn’t want to identify as disabled because they were disabled. And I was an intern, and a professional in that setting.

 

So that was what happened to me, which was not what you asked about. Anyway, I think society just sees the word ‘disabled’ as so negative, and that it has to, like, wrap it in something, or be less than somebody else.

 

And it just, you know, I said like, disability and disabled are not bad words. And it’s okay to say it, it is what it is. And yeah, like, I have a tube in my neck, and I eat with a feeding tube. So, there are things about me that are obviously very different.

 

But I don’t put all these disclaimers on it, like, “I’m differently abled! I eat differently, I breathe differently, I talk differently.” It’s okay. I literally just generalize it, like, “Oh, I’m a disabled woman.” And that’s a-okay.

 

Madeline Cheney  08:51

Oh, I love us so much. That's another question too, I think, that it would be great to talk about – is like, I've also heard parents saying, well, especially within in our audience or in this community, where a lot of our children are very medically complex.

 

And so, I think that kind of comes to this point where it's like, wait, does my child count as being disabled if they are really medically complex, but there aren't other things? Like with Kari and I, where we have like, our children are deafblind.

 

So, those are things that are much more like, oh, that's a disability, right? Like, that's more straightforward. And so, some parents, their children don't have those more obvious, “This is a disability.” They wonder, like, does that count as being disabled if you're medically complex. And I would love to hear your answer in that. To me, I'm like, yeah. Right?

 

Hannah Setzer  09:39

Yeah. So right now, as a thirty-two-year-old, I would say yes. So honestly, like, this came up again and again when I graduated and was applying to jobs. And you know how every job listing says, like, “Do you have a disability?”

 

And I would go through the list of things that I guess qualify on those lists, and yeah, I didn’t qualify for any of them, but usually at the bottom it was say “Other medical conditions?” And I would say yes.

 

Honestly, that was just why I even identified as disabled. I would say yes because I was like, maybe if I said yes, that means I’ll get an interview. Because you know, they have to, like, fulfill their diversity quota. Like, let me be the token disabled person if that means I don’t have to work at Old Navy anymore.

 

But I would use it that way, and like I said, that’s just how my parents would say it to me, it’s like, “Oh, you just have a medical condition.” So, like I said on here, it took a lot of, like, internal processing, and having conversations with other disabled people.

 

And honestly, my best friend Ashley, who has cerebral palsy, one day was like, “Hannah, you literally use it as disabled. Like, I don’t know why you’re so upset about this, like, this is just how it is.” And like, you are stigmatizing yourself by assuming that’s a bad thing to be when it’s not.

 

And so yeah, it took a lot to look inside of me, to get to the point, that sometimes even now I catch myself being ableist and being like, “Oh, but that’s so not me.” Like, I have a husband, and four kids, and a master’s degree, and blah blah blah.

 

But being disabled doesn’t mean I shouldn’t have any of those things that I have. Disabled people can live lives, and love things, and all this, and all things, and whatever.

 

I think society just has ingrained in us so badly that, like, disabled people have no life, and no anything. That it doesn’t equate to being both “disabled and,” it just ends with disabled.

 

Madeline Cheney  12:18

Yeah, it's really important I think, as parents, like, I know that we all want that for our kids, to not feel like this stigma, or feel like they're less than because of their whatever, if it's air quotes, “special needs,” or disabled, or medically complex. Like, we want that for our children, I think it's important to recognize the power of language around that.

 

And like you say, you know, if you're avoiding the term disabled, it kind of implies there's something wrong with that. And I think that, honestly, I feel like to me at least, that was the easiest way to be like, “Oh, okay.”

 

Because like, before we started recording, Kari and I were talking about how as parents like, yeah, we used the term special needs for a while until we learned better and we stopped using that term, right? So, I think we all kind of start that way until we are educated, unless we have previous life experience that helps us be aware of that beforehand.

 

But like, I think that right there to me was reason enough to kind of switch my verbiage over to disabled. To be like, yeah, I don't want to have cutesy terms to kind of sidestep that.

 

Like, he's disabled, and I have complex feelings about it in the way that, you know, his life is threatened, I feel sad about that, and in ways I’m like, oh, he’s adorable, I love his hearing aids, that’s what makes him himself. I want him to be proud of that, and part of that, I think, is using the verbiage.

 

Kari Harbath  13:30

I love that. And I think that you brought up something really great Hannah, which was something that your friend said, along the lines of stigmatizing yourself. Like, when you've avoided the term before, or whatever.

 

And I think back to your point, Maddie, like, sometimes that begins with the parents, too, in the sense of avoiding the terms altogether. And so, through terms, like, I mean, to your point about, like, avoiding terms... I mean, I remember using hashtags. And I know so many do, but I remember using hashtags in my early days, that were so fluffy and cutesy, and just trying in a way probably to validate my own self.

 

And avoid what seemed like, because of the ableist society we live in, such a depressing term to latch on to. Right? Because of ableism. Like, that's really the only reason why. Disabilities aren't a bad thing; disability pride is a real thing.

 

So, I think that stigmatization that you talked about, Hannah, like, that can begin with the parents too. And so, in Sloan's case, early on, when Sloan first born, I remember using terms all the time. Like, special needs.

 

I think I used to say she was my angel, and Sloan, if you know Sloane, I love her dearly. She is the pride and joy of my life, but she is the furthest thing from an angel! (laughs)

 

And so, when I look at those terms that I used to use, it was just because that's what sort of an ableist society had taught me as a parent and a non-disabled individual was normalized, and okay, and palatable. And first, that's not fair to the disabled experience. And then secondly, it's like, we're just inherently creating a stigma.

 

Whether we know we're doing it or not, we're doing that by not just openly using the term, accepting it, embracing it, and having pride for that.

 

And so, so often now, when I use the term, “Oh, yeah, my daughter is disabled, she's deaf blind,” and has some medical complexities and stuff, people will push back. And so often will push back, and say, “Oh, no, she's not disabled, I don't like that term.” You know, I get that a lot. “She's differently abled,” or, “She's special.”

 

And then you'll hear five minutes later, that same person will turn to their child. Their child will have just done something ridiculous, or maybe made a bad move on a playground or something, and they’ll be like, “Oh, he's special.” In like a hateful, derogatory way. Right?

 

And you're like, do you see the disconnect here and the way we're using this terminology? Like, I don't want to latch on to the term special needs. I don't want to latch on to these terms.

 

Disability is a factual statement, and it's what Sloan is experiencing, and I think we need to embrace that.

 

Madeline Cheney  16:20

Okay, I love that.

 

Hannah Setzer  16:22

So, it’s funny, Kari, that you say that, because honestly, that happens to me on social media too. Like, anytime I will refer to myself as disabled. And I’m an adult woman. And people still say, like, “You’re not disabled.”

 

And like, I’m the one who’s saying that! It’s not an insult that someone else is saying to me that I need to be defended from. This is my video, my picture, my caption, whatever, and I’m the one who’s saying that. And people still try to correct me as a grown ass woman.

 

Madeline Cheney  17:04

Well, and that's kind of, like, what I think it's an extension of, almost. Because I mean, I think anyone would be like, “Holy cow, don't do that.” Like, don't correct someone in how they're referring to themselves.

 

And to me, I think that's a little bit of how it feels. You know, like, as parents, it's a little tricky because you know, we're not the disabled person, but I want to refer to Kimball the way that his culture is referring as a whole, right? There are going to be exceptions, but like, as a whole, that's the preferred term.

 

And so, I think in some ways, when we kind of ignore that, and we use the term special needs anyway, that feels like an extension of the people who comment on your post, Hannah, and say, “Oh, no, you're not disabled, you’re special needs. Don't call yourself that.” But instead, it’s us as parents saying that. I don't know if that even makes sense, but I see like a correlation there as parents, or it's a kind of like a version of doing that.

 

Kari Harbath  17:51

To add on to that too, you know, when I look back at like behaviors, as to why, because I've had a lot of pushback making the shift from – we were kind of chatting about this earlier – but making the shift from using terms like special needs, how I used to talk about my experience with Sloan, and what I used to share.

 

I mean, originally when Sloan was born, I shared a lot that I look back on, and it was public, and I'm like, oh, no. Mary Fashik, she does like upgrade accessibility, and she's an amazing dynamic. I don't want to use the term influencer, but she is an influencer, thought leader, amazing person, and the disability space. And she uses this term, “The road to ableism is paved with good intentions.”

 

And I love it, because something I say so often is that like, when Sloan was first born, my well-intentioned mom heart was to create this Instagram account, and do what I saw so many other parents doing, which was to talk about someone's entire life experience without her consent, right?

 

It's different if she's an adult, and she gives consent, she wants to share these things. But it's like down to like, the details around her trach, what her stoma looked like that day, and what we were up to in the OR, and all of these things that she didn't give me permission to share. And I was at the time using hashtags like special needs, and all these, this fluffy terminology.

 

And as I learned –  and hopefully grew, always growing, so that doesn't end, always learning – I had changed what I was sharing, stop sharing a lot of that information, and also started speaking more about using the term disabled Sloan.

 

At one point, just kind of anecdotally sharing the story, I had shared a video of Sloan using her blind cane, standing. And it was just a really short snippet of her, standing with her blind cane like a PT moment, and actually, I've since deleted the video. That was another moment at the time. I was really proud of it; it was something that I thought was really exciting, and then it tbecame so intense.

 

I didn't realize, I guess, the magnitude of how quickly things could go viral. It was another moment where I was like, I didn’t have Sloan’s consent to this. And it was, she was working, she was fine, but she was also working hard at PT. And I was like, what if she doesn't this shared someday?

 

So, I shared this on my page, it went viral, I had like 10 million views, I gained, like, I don't know, it was like 30, 40,000 followers overnight. And then, these followers came into the fold. But many of these followers followed because of, going back to a term that Hannah used earlier, they saw this sort of like token sweet, special angel baby that they could follow and be inspired by. Right? And have inspiration come from her mom, and her family.

 

Little did they know, they were following someone that, like, one has lost half of her family to hard things. And then to Sloan, we were on this path of learning ,like, we don't use terms like “sweet special angel baby” anymore.

 

We use disabled. We are learning from disabled influencers, disabled thought leaders, disabled educators in the space. And that's who's guiding my parenting experience with Sloan. And so, as I started to share that, within... it was like, months after I had gained this huge following, I lost half of the following.

 

And not only did I lose half of the following, but I also lost half of the following with just endless –  to Hannah's point about getting people who comment at you about your experience – endless DMS, comments, that were like, “Your content is offensive because you use the term disabled about your daughter, she is a sweet baby. She is inspirational. You can't say she's not inspirational.”

 

And my whole point was, we shouldn't expect her to be inspirational. We shouldn't expect her to be anything special. She should just be able to get up, and if all she wants to do all day is just sit around and self-stim, why not? Like that's her prerogative, that's not mine.

 

And we expect these big things of people with disabilities when we use terms like special, you know. They're just inflammatory, extra terms that sort of inherently imply something more that's expected.

 

So anyway, yeah, that's kind of anecdotally my own story about just how the terminology has impacted my own parenting experience, and why today now we use the term disabled, even when people are like, “Hey, she is a sweet, special angel baby.” And I'm like, “Dude, just go back and watch the last three reels and maybe you'll feel differently.”

 

Madeline Cheney  22:32

Yeah, I love all of that so much. I think that's so interesting to me too, it just illustrates how controversial this is, and how much language matters. Like, the terms that we're using, how much that matters. And how it kind of paints the experience that we're having, and that our children are having, and the way that our children are seen and perceived. Right?

 

And we don't want them to infantized, or you know, to be this inspiration porn. Just another term. You know, we don't want that. And so, I think using the term disabled is the most respectful, it feels, to me at least.

 

Hannah Setzer  23:02

No, yeah, I agree. Yeah, I have a lot of feelings and things about what Kari just talked about. Like, I have so many. I know y’all do too, and like, so many families that follow me deal with what I talked about, like documenting every single thing, documenting lives.

 

And sometimes I’ve had parents that I talk to in the DMs, and they have argued with me, that their kids are special needs and not disabled. And I’ve been like, you do you. I was like, when was the last time you talked to your kid about these things?

 

And they’re like, I can’t. Like, my kid’s is nonverbal, and whatever, and I’m like, you should still talk about each other’s feelings. Like, that does not mean you need to have this philosophical conversation, and that’s okay.

 

But I think just talking it out and, like, introducing your kids to these things, like, introducing different terminology and different labels, and at some point, someday they might choose one, and the next day they might not. And that’s okay too.

But I think as parents, just not assigning labels onto kids, like, just assigning a label and having it stick. As an adult, they might not want to be a special needs adult, they might want to just be a person on the street. Like, whatever, you know.

 

And my husband and I are foster parents, and we have adopted four boys in foster care. And in foster care, you’re not allowed to post your kids on social media or talk about your kids on social media. And now we can, because we are their guardians, but I still honestly don’t either. But if I do, I get their consent, and they are able to bid it, or not bid it. And that’s okay.

 

I just think, like, in general, society has just been like, “Oh, everything’s an open door, and I’m going to share everything without even talking to anyone about it.” Sometimes even my husband is like, “Don’t post me,” and I’ll be like, whatever. And I don’t, and I get sassy about it.

 

 

Kari Harbath  25:32

No, I love that. I love that. (laughs)

 

And actually, to that point, coming from sort of the parent experience of like, so you have this child. And you know, society, again, ableist society, and just a society that, like, portrays parenthood as just one thing. One way. In so many ways, right?

 

Like, I think of the Instagram picture-perfect birth, with the picture-perfect labor, and the picture-perfect everything. And then you're in like your matching robe and swaddle blanket taking a picture, perfect photo, and you might have applied some makeup and done your hair before the photo post labor. You know what I mean? Like, there's this sense of that now, especially with social media.

 

And after things don't go as portrayed or planned, that you see on social media, it's almost like, being a parent, you know, when I look back, especially initially, when I started sharing Sloan’s experience and using all these fluffy, fluffy terms, and it was like I was the one, in so many ways, needing the validation.

 

Sloan? Man, I love Sloan. Again, dearly, I love Sloan. She's amazing. She is – the term I use for her now, even on her worst days, I mean, she's just such a badass. Like, she just keeps going and going and going. And I'm like, what, dude, we've been through so much!

 

And when people come up to her and say, like, “Oh, I'll pray for her,” I'm like, pray for me! I'm the one that’s struggling! I'm like, hello, are you kidding me? Like, why are you gonna pray for her? She's fine. Look at her.

 

Like, I'm the one going to therapy twice a week, just because I am not the one that's, like, in a wheelchair, why not consider praying for me? So, it's like, anyway, that's my rant. That's my tangent there.

 

But when I look back on my initial days, I think it was really, like, yeah, it was like the sense of me looking for validation as a parent in everything that I shared. And it took a long time, almost sort of to acknowledge that. I mean this is, you know, so hard to admit, but it wasn't about Sloan, in so many ways. It was about me, and needing validation that I was doing things right, that I was parenting Sloan right.

 

And using those terms, that was acceptable by all of my friends, and my society, which unfortunately, at the time, was largely nondisabled, and was largely, there was a pretty huge lack of diversity there. And so, it's like, when I looked at myself at the time, it was me seeking that validation.

 

And now, you know, I'm trying to learn and change and grow and do better in that sense. And you're right, Hannah, that at the end of the day, it goes down to the child. It's like, what does the kid want?

 

And if you don't know what they want, and this is what I go back to when I share Sloan's experience, or when I share our experience, does the benefit of sharing and talking about your experiences outweigh anything else? Are you benefiting? Are you both benefiting? Is she benefiting?

 

And if that ever crosses a line where she's not benefiting anymore in some way, you know, this can get very complicated, and I will not go into depth there because I could go on forever about that. But if she's not benefiting any longer, then it's not worth it. It's not worth because you're right.

 

That like, there are still things to this day that I share that I know some day, I may have to say to Sloan, “I'm sorry. I know I shared that thing.” You know, and like, I know I shared that. And that I shared this picture of us. And I'm very aware and cognizant of that now.

 

Even the blind cane video, that was a big turning point for me because I was like, ooh, yuck I didn't want this random... It was like, Karen1965 that was like, “Oh, sweet, special angel baby,” from like, someplace in Texas that liked and commented on it. And I was like, who is this person? Like that just weirded me out.

 

And so, all of this to say, like, I think in some ways, initially it goes back to it was me acknowledging that it was about my validation and that I really needed to turn it over to like, is it benefiting Sloan? Is it about Sloan? Is this all about Sloan? And is it less about me?

 

Madeline Cheney  29:49

I love all of that. I think part of the draw I see – because I was trying to like, I want to represent the population of people who are listening right now who do use this term, special needs. So, it's not just like, I don't want anyone to feel attacked.

 

And so, I think one of the reasons that special needs is like, a term that some people use, it's definitely more palpable to society, right? Because we do live in the kind of society that wants to put a pretty bow on it, or sidestep disability, or sees it as inherently bad or negative.

 

And so, if I say to Joe Schmo at the store, like, “Oh, yeah, he has special needs.” They're gonna get it. Right? I feel like that's like a term of like, oh, yeah, he's special needs, like, that's the term! Good job, you use the term that we like.

 

Whereas, you know, you can get some pushback if you use the word disabled. Which I would argue like, the more that we are using that word, that is normalizing it and making it like, “Yeah, my son's disabled.” And I think it's a win for the disability space.

 

Whereas like, if we continue to only use the term “special needs,” even if it's from a good place in our heart, with good intentions, we're not trying to be like this ableist bad parent or whatever, like, I think that that can, in some ways, inhibit that kind of mission of normalizing disability, and showing that it's not this inherently bad thing.

 

And I think we do need to kind of see where we stand. It’s like, I almost picture like, there are disabled people, including our children, right? Then there's us as parents, and then kind of society. And I think we need to remember, Kari, like, you were saying, like, oh, who are we going to be more loyal to? Or more like, going to identify with, or be respectful of.

 

Are we going to like, oh, yeah, we're going to cater to society's need for these like palpable terms? Or are we going to listen to disabled people, and be more like allies with them, right, by using the term disabled. And I think it's such a simple thing, right? Like, we're talking about just a simple term, right, whether you use disabled or special needs.

 

But I do think that it's symbolic in that it really can have a big impact. And then I also, like, want to push back a tiny bit, Kari, to what you said, just, we’ll get real. I think, like, it definitely is so good to be like, hey, what is in the best interest of my disabled child? That's what we owe them.

 

But I also do think that like, it is also important to know what kind of support we need as parents. Because like, especially when it comes to medical complexities, and surgeries, and is my child going to live. Like, that's really hard stuff.

 

And so, I think it can be something where you say, okay, like, I could really use some support right now. And I can ask for that support without sharing super vulnerable pictures of my child, without sharing the intimate details of what's going on.

 

But kind of like, oh, man, generally speaking, like, we're having a hard time right now. We're inpatient, I'm just really struggling. And then for that parent to receive that support without compromising the privacy of the child, so that can kind of be a balance.

 

Kari Harbath  32:33

No, I love that.

 

Hannah Setzer  32:36

Yeah, I think that definitely goes for all parents. Like, our kids all have things. And life is tiring. And yeah, I have to walk that line as a parent as well. Like, my kid is hard right now, and just sharing what’s hard. We’re all asking for resources. Yeah, it’s just a delicate balance this way.

 

I mean, as humans, like, we all want connection, and we all want community. And there’s definitely, like, safe spaces for those communities. Like, earlier, y’all talked about going to a deaf blind conference, and I’m sure that experience was really powerful for the both for you. And I hope a positive place.

 

But being in community with people like that, who understand at least a fraction of your life, and going back to your earlier thing, Madeline, I really liked what you said about who are you going to be loyal to, like, society or your people in your house.

 

And I think, yeah, just in the way that we, like, reclaim the word disability, and use it, and use it proudly, and just snap on people that don’t want us to say it. And I think that happens with other marginalized groups too, as well, you know, there’s terms around race that people have reclaimed, there’s terms around sexual identity and sexual orientation that people have reclaimed.

 

So, I think that this is just, like, a time of reclamation for the disabled community. And I’m proud to be a part of that, and I’m proud to know that y’all are striving so hard for that. For your children, and other kids like them and people like me. It’s really powerful, and I just appreciate that a lot.

 

Kari Harbath  34:44

I love that too. As you both were talking, the community thing stood out because going back to, parents needing support as well, it's so... it's so tricky to talk about out terminology, and then parent’s support, and all of these things together, because they are such complicated issues.

 

But as I look back too, the community is really what has led to my own personal growth as Sloan's mom. And so initially, I mean like, you know, Maddie, when you were talking about, and I love what you said when you talked about how parents need support. Especially too, I mean on all levels, but like when it comes to medical complexities.

 

I mean, there are things that I do now with Sloan like trach life, G-Tube life, I guess, well, she doesn't have a G-Tube anymore. But back in the day when she had the G-Tube, like stuff like that, that I learned from this community online. And initially it was from, unfortunately, in some ways, following the special needs hashtag. See, you know, like, and learning from other parents.

 

And so, that's where sort of, when I talk about like, the benefit, it's so hard. It's so hard to pinpoint, because I think there's this other, there's this other side, and this is where my mind gets a little screwy.

 

Because there's this other side of the experience that I've had as Sloan's mom, which is like, I have connected with so many people online, and through sharing Sloan’s experience, that has greatly benefited Sloan at school, through her therapies, through the hospitals, people who have known us when we go in, and may know things about my life that I don't have to explain. That it's really painful to have to explain. And that helps me greatly, and it helps me care for Sloan better.

 

And so that's kind of an aside, all going back to when it comes to the terminology. It started out with me following as a new parent the world of “special needs.” And then, as I followed this world, and I started to connect with you, Hannah, or like Mary Fashik, for example, and then I started to connect with these people, I'm like, wait a second. Maybe I want to change my terminology.

 

Because Sloane someday is going to be an adult, navigating the world with her disabilities, and so, it's like, I want to make sure that she is supported and is able to do so. And using terminology that, and you said this earlier, Maddie, that her culture, her community is using openly and widely.

 

And so that's where it's like, I started by following special needs, and then have grown into disabled and disability, as a parent and as a non-disabled person. And so, it's been a really interesting journey, I think in that sense.

 

Madeline Cheney  37:37

Yeah. And I hope that there's that space in this conversation, too, for whoever's listening, and whatever part of that journey you're in, like, this is not to try to judge people or make people feel shameful.

 

But kind of, I think, I've had people question things like on social media, when I'll post something about using the word disability, and they're like, “Well, what's even wrong with using the term special needs?”

 

With that kind of thing, I'm like, “Okay, I don't feel like I'm really the person to explain this, like, go check out these accounts of disabled people. That's where I've learned that.” But kind of to, like, that kind of answer that question, I guess, with this conversation.

 

But Hannah, I have a question for you, because it's something I've also grappled with. One of the benefits of using the term special needs is that you can say “I'm a special needs mom,” right? And everyone knows what you're talking about.

 

Like, that's a very accepted term. That's what a lot of people use, society as a whole. And so, as I've switched over to like disability, and that term medically complex, that's when I use as well because that sums up Kimball well, as well.

 

I'm kind of like, okay, so like, if I just want to have a quick way to address this community of parents, or I want to like call myself something, it's kind of hard to know what to say. And I've heard the term disability parent, which I think is kind of confusing. Because sort of sounds like you are a parent who is disabled.

 

Medical mom is something I've heard and used before, but I just honestly sometimes I just say I'm a parent to a child with disabilities because that's what it is. It's just such a long term. Is there a catchy term that is, like, acceptable? I don't know. Hannah, what are your thoughts on that?

 

Hannah Setzer  39:06

I have no idea. I personally hate the term ‘special needs mom,’ and you see it all the time, like, ‘autism mom.’ I think for one, it’s just incorrect. Like, special needs mom, kind of like you were just saying, kind of sounds like you yourself have special needs.

 

And I think, honestly, it’s still fine. I’m not judging anyone, or shaming anyone. I think people need community, and when you’re thrown into this very unexpected thing, parenting a disabled kid, like...

 

Kind of like Kari said, like, you’re searching the hashtags, you’re like, someone tell me what to do, I don’t know what to do. There’s no roadmap, right, this is not what I thought it would be like when I got pregnant. And so, you’re just, like, clinging on to anything that you think you should cling on to.

 

And I think it’s so, like, sticky, because I think some people do put a lot to their kids’ identity, and they use it kind of in an icky way. Like, to get sympathy, or I don’t know. You know? Like, I’m not saying y’all do that, and I hope many people listening don’t do that.

 

But I have known people that have done that, kind of just like taken on this identity to acquire... I don’t know, you know? Sympathy, or help and pity. And I think, honestly, it’s adopted usually in a very, like they were saying, in good grace, in a good heart. But those are my feelings, and I just don’t really like it.

I have a lot of feelings about moms in general. I don’t know, it’s hard. Yeah, this talk is very hard. And I’ve only been a mom for three years, so I don’t really know why.

 

But I’m always in, like, I desire those people to have their own identities, like, aside from being a mom. Like, you’re not just a mom, you’re your own person. And like, you spend literally 99.9% of your brain thinking about these other people you have to care for yet you are still people yourself. 

 

And so sometimes I think it’s okay to say like, “Hey, I’m Maddie, and this is my son Kimball.” And that’s all you have to say. You don’t have to put just labels. I mean, kids might look different, and they act different, but you don’t owe anyone explanations for those things.

 

Like, your kids don’t need to be justified, and you don’t need to be justified in how tired you are. You’re a person, and you’re doing a lot. And I just don’t think identifiers like that are super helpful or necessary, because you’re a person, and your kid’s a person, and that’s all they have to be.

 

Madeline Cheney  42:20

Totally. And we even had a whole episode about this concept of the identity that we take on as parents, with Emily Ladau, Episode 85. Because that's been something also, and I feel like it's very related to the terms we're using is like, how do we identify as parents.

 

And Kari, I don't know if you agree with this, but like, as a parent, like especially since Kimball has stabilized medically a lot in the last while and so I feel less this way now. I feel like I've been able to reclaim kind of my independent identity.

 

But for a while, when your whole day is dedicated to their medical care, and the therapies, and the appointments, like, it kind of, I think it just inherently kind of does take over your identity in some way, or at least affects it. Right? Like, there are some things I'm like, I will never see the world the same way I did before I had Kimball, because of his disabilities.

 

But I love that permission you give, and I think it's important for all parents to feel this and to be reminded that like, we don't owe anyone an explanation. Like if we are like, we don't need to add, “and he's disabled,” or like any of those things.

 

Like, he can just be, and I can just be, and we don't need to explain that. Unless it's like the doctor and we need to tell them about, you know, the things that actually are relevant.

 

Kari Harbath  43:27

I love all that, I agree 1,000%. Sloan’s the same way, she will always have her lifelong disability of deaf blindness. But beyond that, like, medically, it isn't as risky as it was there for a long time and intense.

 

And so, in some ways I had, again, through my own social media journey, and oversharing, and trying to balance, and still learning, and always evolving, and all those things, I have had to figure out what my own identity looks like. And in many ways, in my own personal life and other big life changes that have happened, I've had to figure out what my identity looks like.

 

But with that said, I also want to add to the disclaimers or the terminology or whatever, this may not be the most appropriate thing to say.

 

I think that at the end of the day, when you're out and about, and you're the parent and you have – especially as your child grows, and if they are aware, and they're understanding what you're saying. And you need to maybe start having those conversations, they give you permission on what you say while you're out and about, and people ask you questions and things like that.

 

But in those early days where they're just a baby, or they're just a toddler, and they're doing their own wild thing, and you're out and about, and some stranger, some rando on the street asks you invasive questions or wants invasively to be like, “Wow, what's her name?” I get that a lot.

 

You know, like, we'll be out just wheeling along the street and suddenly, some random dude walks up and he's like, “Oh, what an angel! What's her name?” And I'm just like, “Sloan.” And so nice of him, but keep on wheeling because I'm like, today's not the day. It's not a safe space. I'm not interested, Sloan’s not interested. We have places to go, people to see, things to do.

 

And I think that goes back to the identity of not just you as a parent, but her as a human, you as a family, and also just safe places. Like, if you are in a place where you don't feel like you're safe to give disclaimers, then yeah, like Hannah said, just say, “Hey, I'm Kari and this is Sloan, and we’re gonna keep on walking.”

 

There were early days where I felt like I had to give those disclaimers to be like, “She's my special needs baby, she was born on this day, and she has this diagnosis, and this was a surgery she had.” And I don't do that anymore, because it's not always safe. And people's reactions don't make me feel good.

 

If Sloan is aware of those reactions happening, she's probably not feeling great. And so, it's just not worth it. And so, I think you know, you can always assess is it safe for you first too, and your child.

 

Hannah Setzer  45:59

Yeah. I agree with you on that. I think, I feel like I was just really mean unintentionally, but I know how it feels to, like, be in the unknown and want validation and want community. But especially when my husband and I started in foster care, so we were like, “What in the world is foster case? And what in the world is trauma, and teenagers with trauma? Like, what in the dang room is happening?”

 

And so, like, you know what I went and searched, like hashtag foster care, blah blah blah. And I very much did not want to shame anyone, being like, at the end of the day, I understand you. Because yes. It’s unknown, and you’re excited, and there’s not books on Amazon on what to do when a fifteen-year-old gets dropped off on your doorstep. Like, nothing can tell you how to do these things.

 

Nothing tells you what happens when your baby’s born, and it’s 0 percent what it was supposed to be like. Like, you know? So, don’t think I’m like a horrible person who is just shaming you for the things that you say.

 

I just think that everything with this conversation, like, you said, right, this is how people learn and grow. And I think that’s what the three of us want. So, let’s just be open to new terminology and new ideas.

 

Kari Harbath  47:47

Yeah, I love that. I think that, well, first off, I think this is all kind of, like, anecdotal again, but on one side, the parenting journey, it's, as we all know, it can just... I feel like sometimes, parents, we get in our own worlds.

 

And then, because with social media, I used to be like anti-social media everything. I worked in corporate social media for a long time, and I was like, this is the worst. And now, I'm kind of sometimes a fan. Hate to say it.

 

But, with that said, I think that parenthood, especially as it's depicted on social media, or online, creates sort of this defense mechanism for people. Because in many ways, we can become defensive of our own journeys, our own decisions.

 

And like you said, I think this is such a wonderful conversation, and such a necessary conversation because like, one thing that I've learned in parenting Sloan is to let my guard down, let those defenses down. Because I'm not disabled. And to understand what it's like for when Sloan becomes a disabled adult, what her life might look like, what terminology she might want to be used.

 

And social media, one has allowed that and connecting to that community on social media. But then two it's like these open conversations, you know, really listening to one another, connecting with one another, and letting that defense down as a parent.

 

And so, I guess I just want to say too, like, anything that we say here that I say here only ever really comes from a place of support and love and lack of judgment in a lot of ways. Like at the end of the day, it's like, all of us are just trying to survive at a very basic level in the world today.

 

And so it's like, I think that we place so much judgment on others, and then our online personas can be seen as so intense, or so, they can be perceived by people as one way to sometimes. Like I know I have been perceived by people as one way, and then I met them in real life and they're like, “Wow, you were actually really happy, and talkative,” and I’m like, what did you think I was gonna be like?

 

And so, I think that, well, happy is an exaggeration. But anyway, all of that to say, I think that these open conversations are necessary. This in real life communication is necessary. And as parents, from my own parent experience, starting to let that defense and that guard down and really listening to others and their lived experiences is so important. And so, Hannah, thank you for sharing all that you've shared today, by the way. Because like, I have learned so much from you.

 

That's great for me, whatever, but it's translated to Sloan's actual lived experience as a child growing into an adult. And you're doing that for so many disabled kids everywhere, through their parents, who have these like ableist attitudes and perspectives on the world. So thank you.

 

Hannah Setzer  50:50

Aw, thank you. I’m only like one percent sad that Sloan doesn’t have a G-Tube anymore so you can’t text me and be like, “What do I do about this?” (laughs)

 

Now you just have to text me about The Bachelor and other stupid things.

 

Kari Harbath  51:08

Okay. Yeah, The Bachelor, let’s text about Bachelor now. I cried when I took the G-Tube out. The things that you never think you'll do, because I missed it!

 

Madeline Cheney  51:16

When I took Kimball's G-Tube out, we were like, “Let's have like a celebration, because he did it,” right, and he was crying for like a week. He was so sad. I mean, like, it's like, man, if I had only known that this would be this sad when we just got it and I hated that thing.

 

Kari Harbath  51:31

No, for real. I mean, that's how trach life is now too. Like, we're possibly getting close to Sloan I'm getting her trach out maybe. But with that said, who knows, one, but two, I'm also like, I love trach life! And so, I'm like, it will be sad. The day that it comes out, it will be a weird day.

 

Madeline Cheney  51:49

Yeah, no, that is, that could be a whole episode. The grief you feel when the medical devices are the things that you used to, like, hate leave and you're like, wait, I hated you. Now I love you. Please stay.

 

Kari Harbath  52:02

You're so cute.

 

Madeline Cheney  52:05

Yeah, well, I love this conversation. I would love to wrap up, Hannah, if you would honor us with what you want every parent to know of disabled children, like what you would love for us to kind of take away from this conversation, and like, man, if I could just tell every parent this one thing, if they could understand this one thing, what would that be?

 

Hannah Setzer  52:24

Just one? That’s so hard.

 

Madeline Cheney  52:26

It's okay, we’ll take what you can give us.

 

Hannah Setzer  52:29

I think one, it’s okay to like, not love every minute of being a parent. And it’s okay to say that it’s really freaking hard.  Both of those things are true, but more often than not I feel, you know, like we’ve been talking about for the past hour, like, we’ve just been so conditioned to see the highlights, and see the pretty things.

 

And then like, when somebody is honest about motherhood and parenting, people are like, oh my gosh! Like, what? Somebody else feels this way? And it’s like, no duh, we all feel this way, it’s just nobody is talking about it.

 

And two, I would say, love and accept your kids as they are. I think you know when you really dig at that, like, you have fostered such an independent spirit in Sloan, and like you said, she is a type of badass.

 

And my kids, like, love watching her videos and they’re like, “Oh my gosh, like, she’s literally the sassiest person we’ve ever seen!” And I’m like, “I know.” And I think you’ve just done such a great job at loving the crap out of Sloan as she is right now today, and Madeline I’m sure you do that for Kimball as well. We are just new friends, so I don’t know that, but I assume it’s true.

 

Yeah, and just, like, life is just so hard and there are just so many expectations that we put on ourselves as mothers but also on our kids. And man, like, expectations are just setting you for disappointment.

 

And so, like, just loving the crap out of your kid for who they are and where they are, and maybe things will improve. And maybe they won’t. And like, you and your people will figure that out as you go, and that will be okay. You don’t have to, you know, hope that things will do a 180 one day.

 

But people are always, you know even now people say to me, like, “Oh, I’m praying that you get better.” And I’m like, get better from what? Like, I have a wonderful life. And I’m sure that your kids have incredible lives, and they go to school, and they have friends.

 

And like, yesterday I literally saw a video of Sloan reading the Bible on Instagram. And it’s like, what, is she like three years old? How old is she?

 

Kari Harbath  55:14

Yes, three, yeah.

 

Hannah Setzer  55:17

So three, literally reading like brail Bibles. And it’s like, okay. Like, you go, girl. She’s living her best life. And your kids are just so incredible and amazing. And it’s not that it’s bad to have hope, and to pray and do what’s best for you, but life is really good as it is. And I think we really get so hard in the weeds that we forget to see that. I know I do as a parent, personally.

 

Madeline Cheney  55:50

Yeah, I really love that. And I think, like, one thing that is so interesting to me, I don't want to make a blanket statement, but in interviewing a lot of parents, I feel like it's so interesting where these kids, even when they have things that are like, medically really scary, or like, you know, painful or things that are like, man, I would hate to go through that, and they find so much joy in life.

 

And they love, I don't know, like Kimball always was obsessed with the windows, because he couldn't really see. And so, like, seeing the windows, he just loved that. He could not get enough of that. And he would just sit there just giggle.

 

And I would be like, dude, you're going through so much like medically, written out of the hospital all the time. But you are so, like, you love this, you love your life.

 

And I think that is something that's so amazing, is like whether or not you have things that make your life painful, or you know, you're in the hospital a lot, or you're fighting for your life, like, to see them finding joy in the little things and like, I don't know.

 

I think that was a really big moment for me as a parent was like, wow. He has a great life. You would think this would be miserable, but he has a great life. And he has a lot of joy, and a lot of ups and downs like any human, but like, I think that's a really big moment too.

 

And to see people like you, Hannah, like living your life as a disabled person, I mean like, I love my life. And I love being disabled, and I wouldn't change anything. I think that's really empowering as a parent as well.

 

Hannah Setzer  57:08

Yeah, I think that growing up, my mom used to say like, “Oh, you’re the strongest person I know, Hannah.” And now, like, as an adult I’m like, oh my gosh, you are the strongest person I know because you had to just watch me go through everything.

 

To me, and probably to your kids too, like, you don’t know anything else. Like, I didn’t know anything else. I had surgeries every summer and every Christmas growing up, my whole life. But every summer and every Christmas, like clockwork, I knew I would have more surgeries.

 

And it was my life. Right? And I had a great life growing up too, and I have a great life now. And Maddie, I know you and I talked about maybe trying to do an episode with my mom, because that would be so fun, to like, hear both perspectives.

 

And I’m like, kids just don’t know anything other than this. You are giving your kids such amazing lives, and like, you’re so sacrificial in giving them everything, that honestly they don’t know. Like, they don’t know that things are terrible.

 

You know, y’all are amazing, and your kids are amazing. And it’s really hard to be a parent and watch your kid go through things. But your kids, and I myself, are just so strong, and you know, just do what you gotta do.

 

Like, as a kid, I just did, you know, what doctors and my parents told me I had to do. You know, this is the surgery we have coming up. Let’s do it. Get it over with. And then go back to, like, running around my cul-de-sac and just living my best life and whatever I was doing.

 

Madeline Cheney  58:56

I love that. And I think, like, that is a moment that is also very powerful. Like I think maybe we all have that moment of realization of like, this is likely, and I don't want this to come across the wrong way, but Hannah, you were kind of saying this. So maybe I have permission to say this.

 

This is likely harder for me as a parent than it is for Kimball right now. Right? Because like, as a parent, you would do anything to take away suffering, you’d do anything to make their life as easy as possible.

 

And so, seeing him hooked up to all these wires and tubes and stuff in the hospital, like this is likely more painful for me than for him. Like I don't think he's having a great time, but like you say, Hannah, he doesn't know any different.

 

That in and of itself is kind of like, oh, that kind of stings. But like, I think that that's a really great way for us to be like, Kari, like what you said at the beginning like, pray for me, dude. She doesn't need the prayers, like, pray for me. Again, depending on what's going on.

 

But like, I just think that like recognizing that like, you know what, he's fine. He'll be fine. He doesn't know any different. This is hard for me, because like, I think of what “should be,” right, quote, air quotes, and I'm like, oh, this isn't fair to him and all that. But like, I think that can be a really empowering moment to kind of like really process that idea of like, this is likely... he's fine. Like, he'll be fine.

 

Anyway. Okay, thank you so much. I feel like we could go on and on and on. But just to wrap things up, thank you so much, Kari, and thank you so much, Hannah. I really, really appreciate both of your perspectives.

 

And I know we were talking earlier, like, Hannah is the superstar of this show. And we're just like, so grateful for people like you, and you in particular that are willing to share, like Kari was talking earlier, willing to share, you know, on social media and be so open and in your book. And then episodes like this on podcast, like, where you're willing to teach us as parents.

 

It does make a huge impact on us personally, but especially for our children. And so, the disabled community as they grow and they become disabled adults, I just, I so appreciate the time that you've taken to share with us and to teach us. So, thank you.

 

 

Hannah Setzer  1:00:52

Oh my gosh, thank you. This was so fun, and yeah. I mean, Kari said, like, she learned stuff in this conversation and I did too. I just so appreciate, just, the ability to talk honestly and share right now what we think is best. I think we’re all learning and growing constantly, and trying to do better, trying to know better. So, I appreciate the two of you.

 

Madeline Cheney  1:01:18

Awesome. Yes. And like I guess one last, last thing. One of the reasons I love having these conversations is just to reiterate over and over again, like, it is not us against them. It's not disabled people against the parents, like we need to work together.

 

And yes, we have different lived experiences, but like, I really think there's so much that we can benefit a lot. And especially us as the parents, we benefit so much from putting down the defenses and really being willing to learn, and to kind of like let that affect our experiences and how we see things. So, thank you so much.

 

Kari Harbath  1:01:48

Thank you. This was awesome.

 

Madeline Cheney  1:01:51

There are links in the show notes to purchase Hannah's book, and to follow her on Instagram.

I also included links to follow five other disabled adults that I love to learn from, as well as a link to purchase the book Demystifying Disability, by disabled activist Emily Ladau. It is a fantastic, easy to understand crash course about disability that I think every parent needs to read at some point. I highly recommend that as well for anyone wanting to learn more in a non-judgmental way.

 

You can also listen to my conversation with Emily in episode 85, which is all about our identity as parents and how that is affected by our children's disabilities. It was one of our most popular episodes of all time.

 

In the show notes, you can also find links to connect with Kari and me on Instagram.

 

Join us next week for a story episode with mom Suzy, who you may know from Instagram as Oliver's Odyssey. It is an awesome one. Don't miss it. See you then.