Wisdom Shared with Carole Blueweiss

Dwarfism: Raising a Little Person

Episode Notes


Audrey Curwin is the mother of two adult children, Jillian and Benjamin. Audrey was the Assistant Prosecutor in Gloucester County, New Jersey, supervising the domestic violence and sexual assault unit until her retirement in 2006. She was married for 23 years to Michael Curwin, and together, they were the only husband and wife team of first assistant prosecutors in New Jersey.  

Audrey does not shy away from calling out what she considers unacceptable attitudes and common preconceptions. She delves into her experience of raising her eldest child, Jillian, who was born with achondroplasia, which is a form of dwarfism. Audrey, her late husband, Michael, and their son, Ben were all born average height. Jillian's diagnosis brought with it a lot of unknowns and fears and opened a window into the world of labels, accessibility, advocacy, alternate perspectives, and unique challenges. Michael and Audrey were always deeply committed to the idea that Jillian should not be defined by her stature, disability, or diagnosis, but by who she was as a human being

Today, Jillian is a strong, witty, intelligent, fashionable, creative advocate. She is host of the podcast, “Always Looking Up.” In this episode, we will hear from Audrey how words matter, the many ways that the entertainment industry has marginalized little people, and how people diagnosed with dwarfism are often left out of the accessibility formula.


Osteogenesis Imperfecta 
Osteogenesis imperfecta (OI) is an inherited (genetic) bone disorder that is present at birth. It is also known as brittle bone disease. 



Skeletal Displaysia
Skeletal dysplasia is the medical term for a group of about 400 conditions that affect bone development, neurological function, and cartilage growth, including its most common form, achondroplasia.



Achondroplasia is a form of short-limbed dwarfism. The word achondroplasia literally means "without cartilage formation." https://medlineplus.gov/genetics/condition/achondroplasia/


Little People of America


The Missing Piece – Animated Shel Silverstein:


The Cracked Pot Children’s Story


Crip Camp: The Film


Crip Camp: The Revolution



Podcast: https://podcasts.apple.com/us/podcast/always-looking-up/id1567615385




Episode Transcription

[00:00:00] Audrey Curwin: You know, I told her at a very young age that people are going to look because, I said, you're unexpected. And she is. You know, if you go to the mall, you're not expecting to see a little person. So I said that people generally will do a double take, and you just have to get used to that as part of everyday life.

[00:00:18] Carole Blueweiss: Welcome to Wisdom Shared, where parents are the experts and connection inspires change. I am your host, Carole Blueweiss, and today I have as my special guest on season two, episode one, Audrey Curwin, the mother of two adult children, Jillian and Benjamin. Acting as the First Assistant Prosecutor in Gloucester County, New Jersey, Audrey was a supervisor of the Domestic Violence and Sexual Assault Unit until her retirement in 2006. Married 23 years to Michael Curwin, they were most likely the only husband and wife team of First Assistant Prosecutors in New Jersey. After speaking with Audrey, I am reminded of the old adage, sticks and stones may break my bones, but words will never hurt me.

[00:01:09] I don't know about you, but words, though they can't break something physically, they can badly hurt me emotionally, and certainly cause a lot of pain. In this episode, we will learn from Audrey why for little people also referred to as dwarfs, stereotypical language and references are often derogatory and disrespectful. To put it mildly. 

[00:01:34] Audrey Curwin: Midget has a negative connotation. It goes back actually to Tom Thumb and the circus and the freak show and the side show. That's what midget refers to. Just an object for entertainment as opposed to a person that you're speaking with. Kids that are in elementary school, they sign up for football, you wanna start wrestling at a young age, you start up from midget wrestling and now you're trying to tell everybody, do not use these words, but yet they are part of the education. Sign up for cheerleading and this and that, and midget football. 

[00:02:04] Carole Blueweiss: Whether we are talking about words like midget or munchkin, we don't need to venture far to see how words matter. Look how after a lot of advocacy and pressure, the Cleveland Indians changed their name to the Cleveland Guardians. And the Washington Redskins, they changed their names to the Washington Football Team and the ski resort Squaw Valley changed to Palisades, Tahoe. All because these former names were deemed derogatory and offensive towards Native Americans.

[00:02:35] Words do matter. Audrey does not shy away from calling out what she considers unacceptable attitudes and common preconceptions. She delves into her own experience raising her eldest child, Jillian, born with achondroplasia, a form of dwarfism. Audrey, her late husband, Michael, and their son Ben, were all born average height, and they all banded together to support each other.

[00:03:02] Jillian's diagnosis brought with it a lot of unknowns, fears, and tears, as well as a window into the world of labels. Accessibility, advocacy, taunting, creativity, alternate perspectives, and unique challenges. In 2015, Audrey's husband, Michael, passed away suddenly, as Jillian was studying at Rutgers University, on her way to become the strong, witty, intelligent, fashionable, creative advocate she is to this day. 

[00:03:34] I knew Audrey and Michael because Michael went to Camp Kent with my husband in the 1970s. The way Michael and Audrey talked about Jillian was always out of deep commitment that she not be defined by her stature, her disability, or her diagnosis, but rather by who she was as a human being.

[00:03:53] Let's listen to Audrey speak about her journey, bringing up her two children in an average height world.

[00:04:05] The way we know each other is that your husband went to camp with my husband. 

[00:04:11] Audrey Curwin: Yep. All those years ago they went, yep. 

[00:04:14] Carole Blueweiss: All those years ago. You have two children. 

[00:04:18] Audrey Curwin: Mm-hmm. 

[00:04:19] Carole Blueweiss: Tell us a little bit about Jillian. 

[00:04:22] Audrey Curwin: Jillian is 26 years old. She's my first born, and Jillian has achondroplasia, which is the most common form of dwarfism. We never knew that she was a dwarf throughout the whole pregnancy. Dwarfism actually doesn't show up in pregnancy until about the seventh month. So people who do ultrasounds and have certain testing done, back and I'm going back now 26 years ago, so everything's different medically now, but back then you would have your ultrasound and all that other stuff and nothing would show up.

[00:04:53] It typically shows up around the seventh month. I had an ultrasound actually every month because I measured a month bigger than I should have been every month. It never showed up. Literally until they were going to deliver her that day because she actually was breached. She stood up the entire pregnancy. Laziest kid, but then stood up the whole pregnancy like that.

[00:05:13] So, but they have to turn you and when they do it, it's called aversion. And when they do that, they do it with ultrasound. And then they started doing measurements. They have to do it at 37 weeks because they don't want the baby too big in order to turn the baby. They kept saying, keep measuring the head. Keep measuring this, keep measuring that.

[00:05:32] They decided, the doctors, that there was a 15-20% chance it could be a dysplasia, which I had no idea what that meant as far as having a baby, because quite candidly, I only knew German Shepherds had dysplasia and I thought it was a hip problem. So I was extremely concerned, worried, and very confused by that whole thing.

[00:05:54] Carole Blueweiss: Did you ask the doctor? What do you mean dysplasia? 

[00:05:58] Audrey Curwin: Well, then what they said was we had to wait to speak to Dr. Gurd, who was at that time charge of neonatology and he was out doing rounds and then he had lunch. So we literally had to sit there and wait like almost two hours to talk to somebody, and we were just a nervous wreck.

[00:06:13] We had no idea what was going on because this was supposed to be a very routine procedure. It either works or it doesn't. And if the baby is turned, they induce you. You have a child. If it doesn't, then they schedule a C-section. That's what we came in with. We didn't even have a name for the baby. We didn't know if it was a boy or a girl.

[00:06:32] So when we finally met with the doctor and he said, most likely it's probably an achondroplasia because that would be the most common form, and I literally couldn't even pronounce it at the time. I was so confused. The dysplasias at that time for dwarfism, there was 200 different identifiable kinds, and one of them is osteo imperfecta, which is brittle bones.

[00:06:54] Now, there's almost 400 that they can identify through genetic testing. So not knowing if we had a child with dwarfism, they clearly didn't want me to go through the aversion process, which is that turning process because it's so easy to break the baby's bones even in utero. So we have a C-section, I guess about probably 40 minutes later.

[00:07:17] Carole Blueweiss: So you went in there thinking that they're just gonna try to turn the baby. 

[00:07:21] Audrey Curwin: It was crazy actually. We had so many doctors that came in for this because they weren't sure, though they kept telling us to relax and it was only gonna be like, you know, 80-85% chance that there was, everything was going to be fine. The whole anxiety, confusion, worry, concern, like it just took it to a whole nother level. 

[00:07:44] Carole Blueweiss: When the doctor said in the beginning, used this word dysplasia, did he explain to you the significance of that or what that was? And tell us, what is that? 

[00:07:54] Audrey Curwin: Dysplasias are basically an issue with your bone formation. There's many different kinds. For Jillian, she has achondroplasia, which means her long bones are shortened. So like her thigh bone is smaller, her upper arms smaller. She's the most common form. And this, a lot of things also have dysplasias that are kind of connected to it, such as Down syndrome often is related to short stature.

[00:08:20] For her, it shortened her long bones. That's like the most common way to recognize it. For her, that's in her DNA. When I found out that she had achondroplasia, I was so unbelievably scared for her. And I cried all the time because I was like, how are people going to respond to her? Will they be mean to her? Will she have friends?

[00:08:46] Like I, and I literally just cried all the time because I was like, you know, my job was to bring a healthy, happy baby into this world. And I felt like I'd already given a strike against her as a parent. So I cried constantly. And my husband, God bless him, he would say, you get your first newborn one time. That's it.

[00:09:07] This is the first time you're gonna have your first child. He's like, just enjoy this. Don't worry about when she gets married and the prom and all the, like I was so immediately into the future that I couldn't enjoy the present. And my husband is like, she's fantastic. Yeah, she is fantastic, but I'm worried.

[00:09:28] And he's like, stop the worry because I'm going down 25 years from now and she hasn't been alive 24 hours yet on this earth. Michael was very good at grounding me and he was like, just enjoy her. Because worrying about what might happen, it'll happen or it won't. But worrying about it just takes away from the pleasure of just being Jillian's mom.

[00:09:53] And that was fantastic to get me back to where I needed to be. Because she was a fantastic baby, by the way, she was the easiest kid ever and just smiled all the time. I didn't want to split my mothering time worrying and enjoying her. I learned to just enjoy her. Doesn't mean I didn't worry. Like every time I went to bed at night, I, you know, but when I was with her, my day was just, I tried really hard to just focus on all the good and positive and not be concerned about what might happen in the future.

[00:10:26] Because my husband's like, maybe none of that will happen. Maybe all of it will happen. He's like, but we'll be there for her. Though he kind of cheated me on that one. But, you know, the idea that she's not doing this alone. She has us, she'll be fine, so. Makes me cry.

[00:10:52] Typically, the way I explain it is if people saw the Wizard of Oz, and when you see the munchkins, they look like they're totally proportionate. They are actually just lacking human growth hormone. So that actually is, for lack of a better term, quote fixable. Like you can actually, if a child doesn't grow within two years, they check the system. They see if they have enough growth hormone is one of the issues that could be presenting. And they will then treat the child and the child will then grow to its normal DNA height. So if your child was supposed to be Shaquille O'Neal, it will grow that tall. If the child was only gonna be 5'5", it would grow to that height.

[00:11:37] It's not gonna change your DNA, but basically because you're lacking this hormone, then you just couldn't get to your DNA height. Now, they believe they have ways that they can actually change it for people that have it in their DNA, like achondroplasia. I don't know enough about the science behind it. It's controversial, and the only reason I don't know enough behind it right now is because it really has no impact on my daughter's life.

[00:12:01] She's too old for any of these. If we wanted to do a treatment or something like that, it wouldn't apply to her. So I haven't really looked into it that much. 

[00:12:11] Carole Blueweiss: What they called munchkins, which I assume is not a politically correct word. 

[00:12:16] Audrey Curwin: Correct. 

[00:12:18] Carole Blueweiss: Those people in the movie had a different kind of dwarfism than Jillian. Is that what you said? 

[00:12:26] Audrey Curwin: Yes. Because when you see them, most of them are proportionate. They just kind of look like very small adults, but they're proportionate. You know, most people don't see that many dwarfs. But if you look around and you do see dwarfs, you don't really see that many that resemble those people in the movie because that is something that they can treat.

[00:12:46] Like I said, normally every kid goes to the pediatrician, they get a checkup every year. If that child is not growing within two years, then they will check their hormone level. So that's why you really don't see that now. Clearly, I have no medical background, so how I'm describing this is layperson terms. You can't rely on any of this as like medical diagnosis and treatment. 

[00:13:10] Carole Blueweiss: Well yeah, that's okay. You're the parent expert, not the medical expert. 

[00:13:14] Audrey Curwin: Right. Taking another bad movie example, everybody has seen Willy Wonka in the Chocolate Factory and the oompa-loompas, they're mostly achondroplasiacs, which is what Jillian has. So they have certain characteristics that are, like I said, they have the short long bones, which is your thigh bone and your upper arms. Also, characteristics of achondroplasia is they have like a flattened nasal area. They do have some, depending on the degrees, it's called bossing, but basically they have a larger forehead.

[00:13:48] Mostly caused because their ventricles are larger. And oddly enough, because God can be funny at times, they have a much smaller foramen magnum, which is where the ventricles go down into the spine. So that's why they have a lot of spinal issues. It's something too big going into something too small. And so that causes a lot of surgeries for a lot of them.

[00:14:10] We were very lucky we didn't have that issue. They also have trident fingers, meaning that if you were to hold your hand up and you could put all five fingers together, it's a little bit like Spock. From the middle knuckle up, they separate, they kind of go like in a V, so it's called trident fingers. So that's also very characteristic of them.

[00:14:33] And again, none of that really makes any sense. Like, there's really no reason for that to happen. Like you're like, okay, I have, you know, achondroplasia and my long bones are affected. Why in the world those two fingers are affected like that? Like I have never understood the connection, but that's just part of achondroplasia. 

[00:14:53] Carole Blueweiss: Munchkins. What is your reaction to that word? 

[00:14:57] Audrey Curwin: Okay, so there's two ways I answer that. The first way is just my visceral reaction as a parent of a child with achondroplasia, which means, I really don't like the word munchkin. But in reality, many parents with little kids says, oh, she's such a little munchkin, or whatever it is, and they don't mean it like she's a dwarf from a movie. They just mean as just a cute tiny, I say tiny, but like young child. Right? 

[00:15:26] Carole Blueweiss: Right. 

[00:15:27] Audrey Curwin: I have learned with all words, especially the word midget, which is really a very offensive term, but I also know that it depends on who's saying it and why. I actually growing up, and I'm sure a lot of people my age probably have the same experience, and I don't even remember why I remembered this, but it's from school.

[00:15:48] I clearly have a clear memory of it. If you were proportionate, you were called a midget, and if you were disproportionate, you were called a dwarf. That's what I actually was taught in biology, and none of that is true. The medical term is dwarfism. Then there's proportionate dwarfism. Which would be like the people described in The Wizard of Oz, and there's disproportionate dwarfism, which could be achondroplasia and a lot of other things.

[00:16:17] Jillian has an average-sized trunk and short legs. Some people have a shortened trunk and, you know, longer legs. So there's all different types of disproportionality. So when people say something, I try to take it in context of who they are. Do I know their heart? Do I know like why they're asking me a question?

[00:16:37] And then it's an opportunity to educate and there are people that are just clearly just mean and make fun of the whole thing. And we've dealt with that too. The first time I went to a Little People of America conference, I remember sitting at the table. And there's average-size parents and dwarf children and dwarf parents.

[00:16:56] And I remember even asking them like, how do I refer to my daughter? How do I refer to you in the most appropriate way? Because I really didn't know. And if I didn't know because why would I know? Why would you know? Why would anybody know unless you are exposed to it? Nobody thought I was insensitive or stupid or, how could you say these things?

[00:17:19] Or it was rude. I just basically asked the question, if I wanna make sure what I refer to my daughter, what I refer to you, when I educate my friends and my family, that I'm saying the appropriate thing. 

[00:17:29] Carole Blueweiss: Do you still think that that's a good question for people to ask you if they have no idea? 

[00:17:34] Audrey Curwin: Yeah, definitely. Morph dwarfism is not common. So the vocabulary is something that you have to learn. How else do you learn unless somebody teaches you? I don't even have a problem, like I said, if people use the word and they're asking me a question and they're saying something like, is it hard if Jillian being a midget has problems finding shoes or something, and I would just take that opportunity to educate.

[00:17:58] Not because I thought the person wasn't smart or that I thought the person was discriminatory, but just that this person just never had the opportunity to learn before. 

[00:18:07] Carole Blueweiss: What would you say to them? 

[00:18:10] Audrey Curwin: I would say yes, it is difficult, and two is that the proper word is dwarfism. That midget has a negative connotation. It goes back actually to Tom Thumb and the circus and the freak show and the side show where you would have the bearded lady, and that's what midget refers to. It really comes back to that freak show. Just an object for entertainment as opposed to a person that you're speaking with and having lunch with.

[00:18:35] So that's really why it's so negative, because it's, that's what people used it for, was to mock people. Definitely was not inclusive. If you're Irish, if you're Jewish, if you're however you wanna identify yourself, race, religion, sexuality, there are words that people use that are extremely negative, and then there are words that are the proper words.

[00:18:58] Carole Blueweiss: For me, it's a bit of a revelation in having this conversation because it strikes me that having a medical condition like dwarfism is one thing and it has its challenges and there's a lot to learn and there's a lot to deal with. In addition to those, this is what I didn't realize, is that there's the whole history to be blamed, if that's the right word, on film or tv that showed this particular population in a certain light that created a prejudicial or a very negative, derogatory. 

[00:19:31] Audrey Curwin: It's derogatory. It's just derogatory. It's just, like I said, we know words we're not allowed to say. They're hurtful. They have history. They have meaning behind them. Midget is one of them. So you sign up for midget football, those are the kids that are in elementary school. You wanna start wrestling at a young age. You start up from midget wrestling and now you're trying to tell everybody, do not use these words, but yet they are part of the education. 

[00:19:55] Carole Blueweiss: Is that something that is being considered to change, that word, midget sports? Is that up for a debate? 

[00:20:03] Audrey Curwin: Slowly. Response is like, well, how many quote midgets or dwarfs, but they'll say midgets, are really offended by it? How many live here? I've learned it's like almost when you try a jury case, you want the jury to come to you. You want them to agree with you. You don't wanna keep speaking at them, You want them to, all their backgrounds are all different, and yet you want them to come to the same conclusion that you have about this case.

[00:20:28] It's the same thing when I think when we try to change people's perspectives, whether it's vocabulary or actually just how we think about other people. If you come at them too hard, their response is to just go in the opposite direction. If you get them to accept one idea, they're more willing to accept the next idea.

[00:20:50] But if you wanna say, these all have to change, all these things we have to now do, they really look at it as, I don't have the time, the energy, who cares? How many people are really affected by it? You know, it goes on and on and on with all that negative feedback. Instead of saying, yeah, I understand that. I understand why this is a problem. Now they get that. Then you could go and say, okay, well here's another problem. 

[00:21:14] That's how I have dealt with people who are resistant to even having the conversation about, when you talk about midget football, it's always like, well, how many midgets are playing midget football? How could it be offensive to them? They can't really even play. And they can, which is even worse because you know, and they're never gonna call it the dwarf football team because then they would think of them as there's disproportionate group of kids playing football, so who would want that for their league name?

[00:21:40] So it's like, okay, so you could take the circus freak name, that's fine. It's just trying to make it correct. You know, it's not a political thing, it's not apolitical, it's not a right, it's not a left, it's not far left, it's not far right. It is just the correct thing to do, the proper, moral, decent thing to do.

[00:22:00] Carole Blueweiss: Can you give one example? I know you gave one, but can you give another one? The idea of having people understand in a different way if you're educating someone. 

[00:22:11] Audrey Curwin: When people talk about accessibility, people think like we have to be ADA compliant, and people get annoyed with that. They're like, okay, what do we need to build? What do we have to, you know, modify? And they somehow think that there's only one kind of ADA. Well, there's two. We have to help with the blind. That's why we have braille buttons in the elevators, and people think, okay, we're done. We did what we had to do. Right? Which is not sufficient. But the other thing is, okay, and we made a handicapped bathroom, so we put in a stall with a handrail and we made a sink.

[00:22:45] So therefore we're done. Our job is over. But the bottom line is accessibility is not just for a person in a wheelchair. Accessibility is for all people that need to have access. They're like, well, we did it. We did the accessible bathroom. We're ADA compliant so everybody can go away now. So they think now they're done.

[00:23:07] But my daughter can't wash her hands in most bathrooms because the sink's too far away. The faucet, paper toweling, or however you need to dry your hands, oftentimes they're too high. But basically some of these things are so simple to solve. And I did it in my own home, I just turned the sink sideways.

[00:23:28] And once you do that, it's accessible to Shaquille O'Neal and to a 3-year-old child, a 4-year-old child. So it is accessible to everybody, including people in a wheelchair, including people who have vision issues, including people who have height issues. But when you say to somebody, you should really just turn these things sideways and drill the holes on the side instead of on the back.

[00:23:52] The response is like, ugh, really? Like, you know, why? It doesn't look right. Or it's just like one more thing they have to do. They've already done what they thought they needed to do. We put in a rail to help you in the handicap stall. You know, we gave you something to hold onto. Aren't we done? 

[00:24:09] Carole Blueweiss: In your house, tell us a story about the sink. 

[00:24:12] Audrey Curwin: Most people who have children that are dwarfs, you live and surround yourself by stools. Stools of all different heights, right? Because they need a stool to reach the bathroom sink. They need a stool to turn on and off the lights, whatever it is, there's stools in every room. 

[00:24:28] And in the bathroom, there's not that much room in many bathrooms to have the stool, and it's just a hazard. So I thought about, I'm like, she can reach halfway across without a problem. The sink bowl turns, it just spins, so you can put it in any direction you want. You can have the faucet facing the mirror if you wanted to.

[00:24:50] So just by doing a quarter turn solved the problem. And, you know, she didn't need the stool necessarily, so she could just simply go to the bathroom, wash her hands without having to take the stool out from under the sink. It just made it just as accessible to her as it was to Ben, her brother, or to me.

[00:25:10] So that's why we did it that way. You can put those holes, if you're putting in a new bathroom and you've just got a brand new granite or marble countertop, where do you want them? Put them on the side. It solves the problem. 

[00:25:25] Carole Blueweiss: I see. So you put the handles on the side so someone doesn't have to reach so far forwards.

[00:25:29] Audrey Curwin: Right, and so we had the bowl where the faucet and the handles were a part of the bowl, and so we just turned the sink. When I hired the plumber and I said, this is what I wanted to do, and he said, I can't even believe this. He said, well, I'll do it upstairs, but I don't wanna do it downstairs because people are gonna think I don't know what I'm doing.

[00:25:46] If somebody asks and they say, who did it? And you give my name, they're gonna think that I'm not a very good plumber. Because who would put in the sink sideways? 

[00:25:54] Carole Blueweiss: Wait, the plumber was concerned he'd look like he's a bad plumber? 

[00:25:57] Audrey Curwin: Yeah. That is not where you put the faucet. That is not where you put the handles. And I was like, don't really care. Just do it. If you could just make life easier, why wouldn't you do it for your child? I don't wanna step on the stool every time I have to wash my hands. You know, there's a lot of people because they are able-bodied, they don't need help getting dressed. They don't need help walking. They can see, they can hear, they can talk. 

[00:26:25] In the LPA community, they'll say, well, we're not disabled. But once you say you're not disabled, you give up your rights to fight for that accessibility. I don't see it as a personal description. But it's the restriction of freedom. That's how I define it, not whether or not you can dress yourself.

[00:26:45] So like Jillian went shopping the other day at Zara in New York. Everything around her, everything was just too high. It was just simply too high, and they don't need to be that high. And if you're in a wheelchair, it's too high. And if you're a dwarf, it's too high. Just make it three inches shorter, like, you know, then at least you could see the bottom of the shirt or something like that. And do that. 

[00:27:04] Like the world is never gonna be adjusted just for people with dwarfism. It shouldn't be because we don't have a world filled of just nothing but dwarfs. So it needs to be a compromise. No one's gonna say, I was looking at my shirt and the hangar was eye level and now the hangar went shoulder level, oh my god, now I can't buy my shirt anymore. But for her, it does make that difference. She can't buy that shirt because she doesn't even know what it looks like. And especially now, because everybody's short on help, not one person helped her. Nobody. So she walked out of the store. She was like, okay, zero. 

[00:27:38] When your kids are born and they're little, they don't know that they're different. They have no idea. They don't know if they're shorter than other kids. They don't realize that they're not gonna grow like other kids, they don't know anything that's different. They're just kids. They're all playing in the sandbox. By the time they're almost, it's before kindergarten, other kids notice. And then you wanna be able to tell your child that you're different because you don't want some stranger being mean and saying, oh, look at you. You are whatever. 

[00:28:10] You want your child to know who they are and to be proud of who they are and to understand who they are. So you don't want it to come from anybody else other than you. I struggled with that. I wasn't sure how I was going to explain to Jillian that she was a little person. And actually I used the book The Missing Piece as my transition to the conversation. It was by Shell Silverstein, and I'm sure most parents know what it is, but you know, it's this wheel and it's missing this piece and there's benefits to it. The other wheels are going around and around.

[00:28:48] There's also another story about cracked pots. There are these two watering pots. They need to carry water from one place to another. One pot is fine and it gets to the end and it has, oh look, we have our two gallons of water. This is great. The other one, when it gets to the end, doesn't have nearly as much the water.

[00:29:07] So this cracked pot feels really bad about itself and it's like, why am I different? Why am I not like the other pots? But meanwhile, along the journey, it watered flowers, it did all these other wonderful things that, like being different was wonderful. It created joy and beauty and, you know, life for other things around it.

[00:29:28] So, yeah, you weren't like the other pots. Look how wonderful it is that you're not. So that's kind of how we transitioned the conversation, was through that book. You want to be as honest as you can, too. You know, things were definitely gonna be harder for Jillian. From the very beginning, I knew that. 

[00:29:50] Carole Blueweiss: How do you think you were different as a parent raising Ben?

[00:29:54] Audrey Curwin: I was more relaxed about it. You know, I wasn't as concerned about so many things and I didn't have to question if I was doing the right thing. Like they told us when Jillian was born that she had a very fragile neck and spine. And that parents allow their kids to do a lot of things like all the other kids would do, but then when they got to be older, they ended up with, you know, they were on canes by the time they were in their thirties. And you know, just because they would screw up that fragile back and spine. So I was way more careful than I probably needed to be with her because I was neurotic that I would end up seeing her like incapacitated for no reason because of my bad parenting decision, you know, because I decided it was okay to do gymnastics.

[00:30:41] But basically a lot of 'them did do gymnastics and they were fine. And they did a lot of other sports that I was too afraid to allow Jillian to do because I thought I didn't want her to look at me 20 years from now and go, did anybody tell you this was a bad idea and you still let me do it? So with Ben, I didn't have those issues, like it was just a little easier.

[00:31:04] Jillian had the burden of being Jillian all the time, meaning that people were kind or not kind to her and having to figure out her way, you know, going to somebody else's house, they didn't have, you know, sinks turned sideways. So she had to adjust every day, all day long. A little exhausting. And my son had different burdens because his sister was the dwarf, because kids aren't very nice.

[00:31:31] He felt that he had to be her protector. And we never said to him, you have to, like, this is your job. This is your, you know, you are her brother and this is your job. Because I didn't want him to feel that she was his burden. She's our daughter, she's his sister. They should just enjoy each other. I was very proud that he took the path that he took to protect her.

[00:31:58] When Jillian was first born, I was introduced to a family. Their daughter who had achondroplasia was maybe a freshman, and their other sibling was maybe a junior in high school. And the parents had just told me, let them figure it out. But it's up to them what they wanna do. If they wanna be tigers and go against everybody who says anything unkind, they can. And it's okay if they choose not to. 

[00:32:30] And so I took that advice to heart. Because, you know, you can only take advice from the people who've been there before, and you only know so many of them. And he, however, decided that he was going to stand up for his sister, which was nice. But it wasn't always easy for him.

[00:32:48] Carole Blueweiss: Yeah. So, thanks for sharing that because I try to bring up, it's usually a family is a family and everything that anybody does affects one another. And often the focus, if it's just on the child with the specific challenge, that leaves out a lot of the equation, right? How the challenge affects the siblings. 

[00:33:07] Audrey Curwin: Right. And that was something that was...the challenge that affected Ben had nothing to do with how we interacted as a family. When Jillian went to high school and junior high and things weren't always so easy for her and things were kind of not great at times, and she's a girl, you have to include that in the equation because girls are different than boys when it comes to emotional response to their environment.

[00:33:33] So sometimes I would feel like it was a lot about Jillian, you know, because he was easy. He just never really said anything. And I would ask him like, things are good? Yep. Okay. But I didn't realize at the time that not everything was so good, but that he just felt that, because he told me this later, he felt that if he had shared any of his issues, that it would be too much for us.

[00:33:56] Like, you know, we were dealing with Jillian and making sure that she had what she needed. He didn't have the obvious issues, that he thought that he should just keep them to himself. And that really hurt my feelings tremendously, not my feelings, but it hurt me as a mother that he felt the need to protect me and Michael, like, you know, saying like, you know, I'm okay. It's good. Life is great, like every day. Because didn't want us to take on another what he would consider a burden, which is just parenting. It's not a burden. It's what you do as a parent. 

[00:34:32] Carole Blueweiss: And what about your husband, Michael? What, how was his parenting different, do you think? Describe how he managed fatherhood.

[00:34:43] Audrey Curwin: I think he did it fantastically. First of all, as a mother, I would yell about cleaning up. Clean your room, helping me with chores or whatever it was. And so he never, ever raised his voice, I don't think. He only raised his voice once, and that was because I think Ben was like running into the street after a ball, and that was like the only time they ever really heard him yell ever in his lifetime.

[00:35:04] Carole Blueweiss: Wow. 

[00:35:05] Audrey Curwin: Right? It was weird. Because he didn't, they had this thing about like, not disappointing him, but because I was yelling like regularly, they internalized that he didn't, therefore they didn't wanna disappoint him. 

[00:35:19] Carole Blueweiss: And how did he see this diagnosis? 

[00:35:23] Audrey Curwin: You know, anytime you're told your child is different, it's difficult because you're, you do worry. I mean, he worried like I worry. But he didn't get consumed with the worry, like, you know, it would be more incremental at times where I was like, pretty much 24/7. He really did just enjoy the time with them. And then we would talk about it, but it didn't ever leech into his parenting time or, you know, just being dad with them.

[00:35:53] Where I would still be a little like crazy at times just worrying about things. But then again, you know, I'm the one who's going like shoe shopping with my daughter. He's not. So it's easier for fathers in some ways because as a mother of a daughter, shoes are a big deal, right? And anybody seeing Sex in the City understands how big of a deal it can be.

[00:36:14] And she had issues with shoes, like just from forever, you know? So trying to find a pair of shoes that would fit her tiny feet and still looked age appropriate was exhausting. And a lot of tears were shed on her part. Tears were shed on my part, watching her cry. And Michael didn't go through that. Like he never took her shoe shopping like that.

[00:36:38] You know, because he wouldn't know what kind of shoes to get or what. He'd be like, they fit, they're fine. And they would be like, Stride Rite. And she'd be like 12, you know, with little lights on, you know, like he wouldn't know the difference, he would not know. So, you know, so I wouldn't even give him that challenge. 

[00:36:55] Carole Blueweiss: Right. 

[00:36:55] Audrey Curwin: But he did the sports and he, it's very different for men and for women. Because we do respond differently to our emotional stimuli. 

[00:37:02] Carole Blueweiss: Have you listened to any of Jillian's podcasts? 

[00:37:05] Audrey Curwin: Yes. So proud of her. 

[00:37:07] Carole Blueweiss: Do you have a favorite episode? 

[00:37:09] Audrey Curwin: No. I love them all. I think she's very good at doing what she does. For one, I think she handles herself really well. And I think that she allows everybody to express what they need to express and that she's smart about picking her subjects because they all bring something new to the table. They all have a different perspective. And I think that's great. 

[00:37:34] Carole Blueweiss: Why don't you tell us what is the name of Jillian's podcast? 

[00:37:37] Audrey Curwin: Always Looking Up. She's got a blog. She started doing this podcast. I'm sure not a lot of people are aware October is Dwarfism Awareness Month, so she would write something every day for the month, and that turned into this blog. She started years ago writing, posting something for every day of the month specific towards being a little person. 

[00:38:03] Carole Blueweiss: I look forward to actually interviewing her. I think she's a rock star and I have to have her on this podcast. As is her mother. But she has so much to say and one of her episodes, she interviewed a very well-known professional photographer who is doing a project that's very interesting. She photographed Jillian and Jillian chose to interview her, which was also fascinating. I wonder how you felt about the photographs of Jillian. 

[00:38:34] Audrey Curwin: It's really about differences in sexuality and sensuality and identification and disability and that all people are beautiful. And she reached out to Jillian, and Jillian at first was very suspicious because Jillian has been photographed by a lot of people without being asked about it. You know, every time she goes into the airport, she's being photographed now. I mean, she's videotaped all the time. And in fact, was one of the reasons why we had to, she transferred from Tulane, was because kids were following her and videotaping her, and it was quite an issue and very emotional. 

[00:39:13] Again, doesn't want to be an object for someone's entertainment, you know? And that's how people oftentimes treat people with differences. They really look at them as like, I can take your picture because it amuses me, you know?

[00:39:27] And so we were, she was very, very skeptical. And then she did some more research on her and clearly she's a very well-established photographer. She didn't know what to expect, but she did it and I think she looks fantastic. It just shows Jillian and all her beauty and it, she's a little person up on this pedestal, and it just, I think, shows beauty and inner strength and confidence and she's fearsome. 

[00:39:52] She's just like, it's amazing. And I think the photographer did a great job. All the people that participated, they had all their photographs up, different buildings in the West Village. Kind of a neat way of displaying it, and hopefully I think they're gonna be putting it in a book. And Jillian also got into Vogue Italia.

[00:40:09] So I mean, it was great experience. I think Jillian's confidence shown through, and I'm not sure if everyone would've had that confidence to do what she did. Because now you've been saying to people, I'm not an object, to just be like for your amusement. And here she is putting herself on display, but she does it in such a confident way of saying like, this is not for amusement.

[00:40:29] This is to show how beautiful we are. And I think it was a great message because of all the people that were photographed, they all were different and unique in their beauty. And I think it really showed. And it kind of says, yeah, we're all, everybody's beautiful and everybody should feel beautiful.

[00:40:51] Everybody should feel that they have the confidence to go out there and say, I'm okay. You know, I'm great. I'm strong, I'm smart. I can do this. I can conquer this. And it's all different levels of confidence, but we all need to have that confidence. And Jillian has struggled because there's been a lot of obstacles and if it was up to a lot of people, like they kept trying to tear it away from her and she just gets stronger. And I think that really showed in her photographs. So, really proud of her. 

[00:41:25] Carole Blueweiss: Yeah, that's a beautiful description of how it made you feel. On the one hand, photography for Jillian can be offensive and make her feel like an object. On the other hand, given the intent of the photographer, it can do quite the opposite.

[00:41:40] Audrey Curwin: Yeah. 

[00:41:40] Carole Blueweiss: Which just goes to show a lot of the theme that I think we're talking about, too. It's just, it's has to do with the person perceiving and how they're perceiving and who is this person and what is their intent and what is their heart saying and trying to say? As opposed to, or actually wanting to understand someone else that comes through in a photograph.

[00:41:59] Audrey Curwin: They try to like, they're trying to be sneaky about it, but they're obvious and they're taking her picture. They're just walking in the city, walking through an airport, wherever she's going. And sometimes she just takes her phone out because they'll actually video tape her and she'll just turn it right back on them.

[00:42:13] Not that she's really photographing them, but they think they are. And they universally, they all get like very offended by it. Like that she would turn around and take their picture. Because, you know, there's nothing wrong with them. So why would she do that? You know? 

[00:42:27] Carole Blueweiss: That's brilliant. 

[00:42:29] Audrey Curwin: So that's why I said, you know, we were in Disney World the first time and a mother came up to me and she said, are you okay if I take your daughter's picture? And I'm like, I didn't even understand. I'm like, excuse me? First of all, everybody does it without asking me. But I was like, why would you do it? She goes, well, I wanted to show my friends. And she didn't say like, I wanted to show because my girlfriend just had a child with a dwarfism or, you know what I mean? Like, it was just basically like, I wanna do the right thing. I wanna ask permission. But I just really kind of wanna be like, look who's here! Look what I just saw. You know? 

[00:43:00] Carole Blueweiss: Right, right. 

[00:43:01] Audrey Curwin: And so people really, when I tell you, they just look at this as like, for their entertainment, they do. So it's hard. So that's why I said the fact that she would have this photograph displayed, but see, then she's in control of it. 

[00:43:15] Carole Blueweiss: Would you consider dwarfism as a disability? 

[00:43:19] Audrey Curwin: Yes. Not because they can't do what they want to do. They can. They can be judges. They can be doctors. They can be surgeons. And there have been examples where people were told, you can't be a surgeon. They would. Examples, and I know people who said, patients won't respect you.

[00:43:36] They've been told that, you know, you couldn't be a lawyer because who's gonna want you to represent them? Like these are all actual stories that have been told to me. So they can do everything. It's not a matter of saying you're disabled because you can't accomplish your goals. But the work with disability really is because of the ADA and the American Disability Act, and I do want her to have accessibility.

[00:43:58] I do want her to be able to wash her hands in every public bathroom. I do want her to have certain things, and so the fact that she's limited in that and that her freedoms are restricted in that way, that the word disability does not bother me because it is a disability. And we could all find different words that we like better or whatever, but the bottom line is if there is a restriction to your freedoms to do what everybody else can do, it's disabling.

[00:44:31] And so the word itself, I don't see it as something that applies to your individual core. Meaning like what do you wanna be in life, grow up to reach whatever goals you wanna be. You can be anything. But as far as waking up, and by the time you go to bed at night, can you do everything that I can do? Can she do everything that you can do? Not always. 

[00:44:57] So that's why I don't really have an issue with that word, because the American Disabilities Act was a very, very long, hard battle to fight and win. If you wanna see, if you wanna recommend anything, recommend Crip Camp. It's a movie that was on HBO, and it's an amazing documentary that really wasn't even meant to be a documentary, and it turned into one.

[00:45:16] And basically like the federal government was like, well, we could do separate but equal, or how many people are really, you don't need to take the train. You don't need to have accessibility to basic transportation. Like, how do you get to your job? You know? 

[00:45:28] Like the idea that we are disabling them, like society disables them. They can do it. They can be doctors, lawyers, mothers, nurses, psychiatrists, whatever it is, artists. It doesn't matter. They can do it. They have the ability and the skills and the desire to do it, they will. It's just that we disable them as a society. So we need to make sure that we don't. 

[00:45:55] Carole Blueweiss: If you were to run for office and you were head of the American Disabilities Act or had the power to manage it, what would be the first thing you would do?

[00:46:09] Audrey Curwin: It all depends on the culture and the climate of the government that you were in presently at the time. Anybody can become disabled. At any time, I could be hit by a car, I could get a disease, I could get an autoimmune. Something can cause me to then all of a sudden fall under the ADA. So that affects every single person on this earth. Literally. Because we never know what will happen tomorrow.

[00:46:34] And yet it is the most ignored of all the acts that are out there. And I'm not gonna list them all, but you have an idea of what I'm trying to say. Women should have equal pay. That's true. Things are out there and they affect a finite number of people that can fit into this category, right? Whether it's the gay movement or whatever movement you wanna pick.

[00:46:57] People that say, I fit into this. With disability, we all fit into it. And that's why I find it stunning that people really just don't care about it. Find it to be something that is for other people to worry about. Find it unpleasant sometimes to talk about, because nobody likes to talk about. Disability can be from accessible to just being able to wash your hands to clearly much more involved.

[00:47:23] And I think that it's something that really needs to be more publicly addressed and the enforcement has to be tighter and stronger. People have to be aware that there is an ADA out there and that people have to be aware of what it means and people have to be aware of enforcing it and there actually has to be a means of enforcing it.

[00:47:46] And Jillian on her podcast has gone through many examples. If an airline breaks your wheelchair and you are literally have no legs, they basically say, sorry. Even though you now couldn't have gone to the job interview, and you know, you have all these other losses that result from somebody just not caring. Those are your legs. 

[00:48:06] Carole Blueweiss: What would be the way to remedy that? 

[00:48:09] Audrey Curwin: You can't just say, well, the baggage handler just, you know, was not, you know, wasn't being careful. That's not an excuse. And so we have to look at accessibility for everybody to make sure, as I said, everybody who gets off that plane can go to their next destination without interruptions.

[00:48:27] So the idea that we ignore it and just are so cavalier and callous about it is shocking to me. Because it's our parents, it's our siblings, it is our children, it is us, it is our friends. It is, it affects and can affect any one of us. So why do we not all care about it? It's our future. You know? It may not be today, but it might be tomorrow.

[00:48:54] Public awareness is the first thing that has to happen in order to get people to care because nothing else will happen unless we have people aware that this is something that needs to be addressed and needs to be fixed. So there's so many examples of people that are trying to make it happen, which I think is awesome.

[00:49:12] Carole Blueweiss: You brought home so many ideas that are talked about but not really delved into. And this last one about could be anybody. Covid times have brought that home for sure. The real reality that we are all vulnerable. And it also brought home that those most vulnerable have the most vulnerability in a time of crisis.

[00:49:35] And that could be any of us, but for those that are already vulnerable, it's even worse. So why not fix the system now when we can? And another thing that struck home with what you just said was even growing older creates its own disability, right? Being lucky enough to survive middle age and then go into elderly ages, and that inevitably will lead to disability of some sort. What you say that, why isn't this more of a global issue? Why is it just the people that have a specific disabilities have to fight for their rights? When what you're saying is it's really all of our rights and yet it's not getting that attention. It's not being looked at that way.

[00:50:18] There's not enough education and understanding and integration about how our lives go from one end to the other end. And through that, any of us could become that person with a disability, so why not as a culture, a society work on that now? 

[00:50:37] Audrey Curwin: We just think about what affects me, what doesn't affect me, and my life is fine and I just go on and I can ignore the rest. But then tomorrow, you're gonna say, well wait a minute. I need help. I need somebody to say this is wrong and we've ignored it. You know, there's a lot of people because they are able bodied, they don't need help getting dressed. They don't need help walking. They can see, they can hear, they can talk. In the LPA community, they'll say, well, we're not disabled.

[00:51:05] But once you say you're not disabled, you give up your rights to fight for that accessibility. It's become better for the little people community. And therefore, like I said, the more vocal, the more out there you are, the more people listen and the more people go, oh yeah, that is a problem. That girl, as an example, with the wheelchair? I think they said they had broken seven wheelchairs in a month, and it could be me one day. It could be me because I broke my leg and I could be in a wheelchair for just a short time. Or it could be me as I get older and I'm too feeble to walk and I need that wheelchair. So it's not just that you were born this way. It's your legs.

[00:51:41] So it's no different than the air that we breathe. It's all what we're supposed to be able to do. And if you take on the responsibility of transporting somebody, then you gotta make sure they gotta get to where they gotta go. 

[00:51:55] Carole Blueweiss: Are there any other memories or experiences that you feel like you'd like to share that I haven't asked you about? Or anything that would elucidate for you what it's been like, either positive or negative? Maybe it's shown you the strength that you have in responding to other people and how they respond to Jillian. 

[00:52:15] Audrey Curwin: You know, I told her at a very young age that people are going to look. Because, I said, you're unexpected. And she is. You know, if you go to the mall, you're not expecting to see a little person. So I said that people generally will do a double take, and you just have to get used to that as part of everyday life. And so I said, that's just human nature. People are going to look, but you'll know the difference between somebody just going, huh, okay. Wasn't expecting to see that kind of thing. And he kind of like, has it register. Takes like a second or two for some people. Versus the curiosity, you know, the long stare, the pointing, the whispering, the not so whispering. Because basically she's not deaf, but people think for some reason that she is when they wanna be mean.

[00:53:00] What I've learned from her is that her strength is remarkable. There are times when she feels sad about certain things and life has not always been, like I said, fair or kind, and she's had her struggles with it, but she has always come back stronger and more determined. And this is this blog and her podcast, it all is the results of her becoming stronger and all these negative experiences that she's had. I mean, individually people really can be rotten, cruel, and mean. But as a whole, I do think that we are working towards being more accepting of all people, and I think it's important that people with differences and disabilities of all kind, and it's not their burden to educate us at all, and it's not their job is to make us better people. 

[00:54:02] But I do find it to be a fantastic result that these people have given us the opportunity to become better people through their example and made us all a little more sensitive to other people. Not everyone just has a nice charmed life. And everybody struggles with something. Everybody. 

[00:54:20] I don't know a person who doesn't, no matter, everybody thinks grass is greener on the other side, but everybody has a struggle and she is an example of someone who has. But you can learn from her about her struggles are obvious and not always obvious, and yet she's taken them and has made them something that she can help so many people. And that has made me a better parent, a better person, a better mother, a better friend to everybody. She teaches me, you know, to be better all the time.

[00:54:55] Carole Blueweiss: Thanks for coming on. So many things you shared with us that are full of wisdom and making at least me think about a lot more deeply about things that are super important.

[00:55:05] Audrey Curwin: Thank you, Carole, so much for having me. Thank you. And you're doing a good thing by educating people. I think this is fantastic. All good. 

[00:55:14] Carole Blueweiss: Right on.

[00:55:21] I couldn't help but be curious at the end of this interview, and I felt myself wondering, how does Jillian perceive her unique self in the world of average height people? How does she see her mom and dad who brought her up and stood by her side time after time? I found out that Jillian was hosting her own podcast, Always Looking Up, when a random post showed up on my Facebook page.

[00:55:47] That is how I got the idea for the interviews. What synchronicity that the concept of disability were themes in both our podcasts, yet we were coming at it from different angles. I was surprised that Jillian considered herself a person with a disability, and I wanted to understand more. I direct message Jillian to ask if she felt okay about the idea that I interview her mother.

[00:56:10] I explained to her Wisdom Shared, and she said, sure, and only after talking to Audrey and learning from Audrey all that she learned from Jillian did I think to myself, boy, I would love to chat with Jillian. One podcaster to another. And discuss her life as a short person, as a woman in this world, and as a creative with a vision.

[00:56:34] Tune in to season two, episode two, where I ask Jillian challenging questions that she does not shy away from. Her rendition of short statured Disney princesses, her modeling for Vogue Italia, and her advocacy for greater accessibility are just some of the many subjects that come up. I'm grateful that Jillian shared her creativity, passion, grit, and opinions that were very thought provoking. 

[00:56:59] In the meantime, please add Wisdom Shared to your podcast list. Leave a review and pass this Wisdom Shared podcast on to your friends, your coworkers, healthcare providers, educators, and family, so wisdom and compassion can be shared with all. See you next time. Thanks for listening.