Dwarfism: A Mother-Daughter Conversation
Episode Summary
n this episode Jillian and Audrey, mother and daughter, share their perspectives about dwarfism and offer helpful advice and wisdom along the way. They speak about topics ranging from the “sport” of dwarf-tossing to some very enlightening and evolved perspectives on disability, advocacy, decision-making, overcoming challenges, and thriving in a world that does not make it easy to live without being stared at and photographed without consent. Dwarfism is relatively rare so most of us have never met a little person. In this episode, you will gain a new appreciation for the challenges, gifts, and wisdom of one little person and her mom.
From this Episode
Dwarf Tossing
https://en.wikipedia.org/wiki/Dwarf-tossing
Recent Dinklage/Disney Statements onSnow White and the Seven Dwarfs
https://www.npr.org/2022/01/26/1075761231/peter-dinklage-disney
Resources
Books
Far from the Tree: Parents, Children and the Search for Identity by Andrew Solomon
http://andrewsolomon.com/books/far-from-the-tree/
Thinking Big: The Story of a Young Dwarf , by Susan Kuklin
https://www.amazon.com/Thinking-Big-Story-Young-Dwarf/dp/0688058264
The Missing Piece by Shel Silverstein– (animated)
https://www.youtube.com/watch?v=4gEjCJOzqXc
The Cracked Pot Children’s Story
https://alltimeshortstories.com/life-the-cracked-pot/
Associations
Little People of America
https://www.lpaonline.org
American Association of People with Disabilities
https://www.aapd.com
People
Rebecca Cokely, Ford Foundation Program Officer, U.S. Disability Rights
https://www.fordfoundation.org/about/people/rebecca-cokley/
Judy Heumann, Lifelong Advocate for the rights of disabled people
https://judithheumann.com
Follor and Contact Jillian
Podcast:https://podcasts.apple.com/us/podcast/always-looking-up/id1567615385
Instagram:@jill_ilana, @alwayslookingup.podcast
Website:https://www.jillianilana.com
Email:alwayslookingup227@gmail.com
Find and Follow Carole and Wisdom Shared:
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The Wisdom Shared Team
Audio Engineering by Steve Heatherington of Good Podcasting Works
Co-Producer and Marketing Coordinator: Kayla Nelson
Production Assistant: Becki Leigh
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[00:00:00] Carole Blueweiss: Welcome to Wisdom Shared, where parents are the experts and connection inspires change. I am your host, Carole Blueweiss. Today we will hear from Audrey and Jillian Curwin, a mother-daughter conversation with a few questions of mine sprinkled in. If you haven’t already listened to the previous two episodes where I interviewed Audrey and Jillian separately, please hit pause and go back to listen.
[00:00:28] And if you already listened, welcome back. About a month ago, I finally opened the book Far from the Tree, an amazing collection of parenting stories that for good reason had been highly recommended to me. The writer, Andrew Solomon, borrowed the title from the adage ‘the apple doesn’t fall far from the tree’ which implies that children tend to resemble their parents. In his book, Solomon interviews many parents and children who are not like their parents and therefore are far from their tree.
[00:01:01] Solomon experienced his own version of this adage, which spurred him to write this book and to conclude that while differences can feel polarizing, they can also unite us. The families in Far from the Tree and the ones in Wisdom Shared are similar in that, using Solomon’s words here, they point a way for all of us to expand our definition of the human family. Each family in Solomon’s book has their unique story. And what is right for one disabled person or in these episodes, one mother and her daughter born with dwarfism, may not be the same for another mother and daughter born with dwarfism. Even if they have the same gender, condition, or diagnosis.
[00:01:44] While reading Far from the Tree, the sport of dwarf tossing came up. And frankly, I could not wrap my head around this activity. This is where our conversation with Audrey and Jillian begins. Let’s listen.
[00:02:04] Jillian Curwin: Dwarf tossing, literally tossing little people, was a sport. I know it’s recognized as a sport, I believe in Florida.
[00:02:12] Audrey Curwin: It was.
[00:02:13] Jillian Curwin: It was in Australia, New Zealand, and other parts of the world.
[00:02:17] Audrey Curwin: Peter Dinklage win the Emmy the first time?
[00:02:19] Jillian Curwin: 2012, he raised awareness about it. Like 2012, 2011. Granted, I think there are like rights, rules, and regulations. I think everything is done with the person’s consent. But at the same time, it has led to incidents outside of a sport where people have just picked up and tossed little people because they thought it was fun. Because they thought they could, because they’ve seen other little people, I guess, enjoy being tossed and thought every little person does.
[00:02:47] So I know in one instance, a little person was at a bar and some people picked him up and tossed him and he got seriously injured from it. Again, like I think that whole idea of this could be a sport that at the time where little people were definitely treated as less in society and didn’t have a say, didn’t have a voice, and we’re kind of the butt of the like, well, still kind of are, but really were like the court jester. Like that, it comes from that, like from that very historic thinking.
[00:03:18] Audrey Curwin: So like when you said, you know, you understand that, you’re just saying that everybody should be able to pick if they want to do it.
[00:03:25] Jillian Curwin: Yes.
[00:03:25] Audrey Curwin: But it kind of like goes back to like prostitution, you know what I mean? Like if you wanna make money doing it, you should be able to, but the problem is they don’t, they weren’t having other options.
[00:03:36] Jillian Curwin: I’m not putting it in terms of the prostitution. I’m saying more like little people in the entertainment industry, in the more dancing, that section of people who, ’cause people say we should push away from that. But at the same time, it is a form of employment. And like that’s more, I’m not gonna shame anyone for trying to get a job in like that sense, if that makes, if that clarifies things.
[00:03:57] Audrey Curwin: Like being the elf and stuff like that.
[00:04:00] Jillian Curwin: Exactly. Exactly.
[00:04:02] Audrey Curwin: Which is different than the dwarf tossing. And, you know, it’s amazing that whether you did it in a bar and you thought it was okay, or you did it anywhere, the idea that people looked at somebody else as though they were truly just objects without souls. You couldn’t do this to somebody that you thought was a caring human being.
[00:04:25] You just couldn’t pick up somebody and toss them and you couldn’t do it as a joke. You wouldn’t even do it as a sport if you thought for a second that this person mattered.
[00:04:35] Jillian Curwin: Was a person.
[00:04:36] Audrey Curwin: Was a person. That’s right. Like that person actually mattered to somebody.
[00:04:40] Carole Blueweiss: Not an object of fun.
[00:04:42] Jillian Curwin: Yeah.
[00:04:43] Carole Blueweiss: Audrey, you had mentioned two stories when we talked that were particularly, I don’t know if influential is the right word. I’m guessing Jillian is aware of these stories. You might have talked to her. Do you know what I’m talking about? The cracked pot story?
[00:04:57] Audrey Curwin: Oh yeah.
[00:04:58] Jillian Curwin: The what?
[00:04:59] Carole Blueweiss: And the missing piece.
[00:05:00] Audrey Curwin: And the missing piece. Yeah.
[00:05:02] Carole Blueweiss: Those are the two stories. One by Shel Silverstein. And the other one is a fable. Do you have a memory of hearing those stories as a child?
[00:05:09] Jillian Curwin: Well, cracked pot, I don’t remember. Missing piece, I do, ’cause it was a book by Shel Silverstein and I had it on my bookshelf for years and years and years. And I know I’ve read it and like it’s been read to me and it’s a story of, I don’t know, like a, like what would you call it, mom? Like a…?
[00:05:25] Audrey Curwin: Like a, like the pie piece, like you’re missing like a pizza slice.
[00:05:28] Jillian Curwin: Yeah. Then he’s like just trying to find his missing piece. And some pieces are too small. Some pieces are too big, but it’s just trying to find the right piece that fits. But I just remember like that being read to me a lot when I was younger.
[00:05:43] Audrey Curwin: This is the way we transitioned into explaining to her that she was a little person because, you know, she’s just a little kid. She’s three years old, four years old, five years old. She’s got no idea that she is a little person. She’s just a kid, like all the other kids. And it was explained to me that there are two different distinct times in a child’s life where they understand about dwarfism. One is the physical part of it. You are a dwarf, and that was what the missing piece was.
[00:06:12] The emotional part of it as to what that implies later on comes basically when you’re like 10, 12, 13, that age. So we used this book to try to like transition to explaining to her that she’s different. But different is good. And so that she would learn that, to embrace her difference because her friends were gonna grow up much taller within a year.
[00:06:40] They were way taller and could do things that she couldn’t do and reach things. She couldn’t reach and play on jungle gyms and stuff like that. So we wanted her to be aware that it’s because she was little, but it also makes her special, too. And to embrace that difference. So we used that book as that stepping stone to get there and it worked. We think.
[00:07:02] Jillian Curwin: Yeah.
[00:07:04] Audrey Curwin: But I like that book. And the other one, the cracked pots, which is about the, I think it was in India and they carry these water pots and one pot has a hole in it. And so by the time they get from the well to where they have to go, he doesn’t have all the water that it’s supposed to have and basically he was feeling bad.
[00:07:24] And then the other one says, but look at all the things that you’ve done along the way because you are different. You have watered flowers, all these, you know, which have gotten to bloom. And it just goes on and on about all the wonderful things and benefits that come about because it’s different so that, you know, wanting to be the same doesn’t mean it’s gonna be better because you’re just like everyone else. There’s beauty in everything.
[00:07:51] Jillian Curwin: I was just like, it’s a bedtime story.
[00:07:54] Carole Blueweiss: I’m guessing it went somewhere in your mind because you seem to be appreciative of who you are right now and.
[00:07:59] Jillian Curwin: Yeah.
[00:08:00] Carole Blueweiss: What your mom wanted you to feel seems to have taken its place in your psyche. What do you think?
[00:08:06] Jillian Curwin: I think so. I think I didn’t recognize, clearly didn’t recognize what they were doing at the time. ‘Cause I think to me, in terms of learning about being a little person, that came from when I think I talked about it with you before, but definitely the book Thinking Big, which is about a little person, a real-life little person.
[00:08:23] So seeing her life and seeing how she does things at my age. So I think I guess I was like five or six and I started reading that and it was Jamie, I think was the girl in the book. Like she was around the same age. She was seeing the same doctor I was seeing. So I think that resonated more with me with like how to be a little person or how to be different or how to be aware of it.
[00:08:45] Audrey Curwin: But yeah, Thinking Big was big, was a great book.
[00:08:48] Jillian Curwin: Yeah.
[00:08:49] Audrey Curwin: So simple and so perfect.
[00:08:51] Carole Blueweiss: Tell us a little bit about Thinking Big.
[00:08:54] Jillian Curwin: That’s a story about a little person. I think it was maybe written in the eighties. Right mom?
[00:09:01] Audrey Curwin: Mm-hmm.
[00:09:02] Jillian Curwin: And they just kind of like followed her around and they explained the different things she does. How she, how her mom I remember either made alterations or sewed all her clothes. Modifications she made at school. Her relationship with her younger brother who was not a little person. LPA. Kind of just followed her around for a little bit and showed like a glimpse of what it’s like to be a little person.
[00:09:27] They went to the doctor with her. So I think seeing that and seeing her use a stool and learning your brother will still treat you like your older sister, even if you’re shorter than him. She’ll still treat you like your big older sister who’s probably a really big pain in the butt. I know that was a book that I used to then teach others about what a little person is.
[00:09:49] So I think that, in terms of like learning what it meant to be a little person, that is what really resonated with me.
[00:09:56] Audrey Curwin: It was a short book and it was photographs.
[00:09:59] Jillian Curwin: Yeah.
[00:09:59] Audrey Curwin: So it showed her using her stool. It showed her like, you know, she couldn’t do the jungle gym, like the climbing on the bars, the monkey bars. It explained that she’s warmer, which little people are. So she doesn’t need to be as bundled up. But it was just these like little snippets of her everyday life. But they did it with photographs, too. So it was really designed to let us know for one, that as parents, that this is kind of like the life of your child, because you can’t ask your friends, you know, I got the book What to Expect When You’re Expecting, I got the book What to Expect in the First Five Years, none of that applied.
[00:10:35] So this book kind of was like, okay, I get this. This is what I’m going to expect. And it showed it in very simple terms so that a parent can understand it and that your child can definitely learn from it and use it as a way, and she did. She taught other people with it. She went to the other classes and taught them with that book.
[00:10:55] Carole Blueweiss: Audrey, did you say something about being warmer as a little person?
[00:11:00] Audrey Curwin: They just run warmer. They’re I mean like, obviously they’re 98.6, like the rest of us, but their body temperatures just run warmer so they don’t get as cold as we do. It’s amazing actually, when they’re little, when you look at it, ’cause other kids are running around in like much heavier stuff and they don’t need it. And who knew, right? Your first instinct as a parent is ‘put your hat on, put your scarf on.’ And she’s like, I really don’t need it. And I’m like, but it’s cold out there. Even though I read the book, you know, you still go to your go-to, which is like, I’m cold, you’re cold.
[00:11:34] Jillian Curwin: In elementary school and I’d meet my friends at the bus stop and they’d be wearing like heavy winter jackets. And I’d be like in just something a lot lighter. And even now, like I can hold out until it gets really, really cold before I like put on the heavy winter gear.
[00:11:50] Carole Blueweiss: Has this ever come up in your discussions as a family about limb lengthening?
[00:11:55] Jillian Curwin: Yes.
[00:11:55] Audrey Curwin: Yes.
[00:11:57] Jillian Curwin: We’ve talked about it. So that is a surgical procedure that does basically what it sounds like. You…isn’t, don’t they use the external fixators, mom, to do it?
[00:12:09] Audrey Curwin: What they do is they go in and basically breaking the bone apart every day and then having the bone regrow. It can get you anywhere between, like they said, and I’m going back way back when we were looking at it with Jillian, maybe five to eight inches?
[00:12:26] Jillian Curwin: No.
[00:12:26] Audrey Curwin: Which is huge when you’re – higher?
[00:12:28] Jillian Curwin: I don’t think it’s that high. I think five is like the max.
[00:12:32] Audrey Curwin: No, I think you could be taller, but it’s extremely painful. And I don’t know if they, obviously, I haven’t looked at this in about 20 years, but at the time it’s extremely painful. And even today, when they’re doing these new medications that are out there to try to get people to not be little people anymore, the problem is for Jillian, if she were to have done it, if we’d have allowed her to do it, it takes about a year of recovery. And you are still a little person. So now you have this length in your legs, but your feet are still only a size four. So it’s, you know, and your hands are still tiny. And so everything else about you is still a little person. DNA. You’ve just now elongated just the limb. So, your feet kind of are proportionate to your height because there’s a reason why God did it that way. Like, you know, we are meant to stand up that way.
[00:13:27] And so there’s all these issues about, you’re only kind of correcting part of it, but you really now are you part of the, for them, it was back then, are you part of the little people world? Are you part of the average height world? Because the average height world’s gonna look at you and go, you still look like a dwarf. And you know, for certain reasons, and the little people are gonna say, well, you rejected us.
[00:13:51] Jillian Curwin: And I think why I was considering it was purely more for emotional and social reasons. Less, if any, at all physical. It was purely ’cause I thought like a lot of people do, like maybe I’ll fit in. ‘Cause I was always the only little person in the room except at LPA and wanted to fit in. And it was at the time where it’s going into middle school. Kids are not the nicest. I just wanted to try and fit in and thought at the time that that could be an option for me. They never brought it up and said, would you wanna do this? It was always me bringing the conversation to them and wanting to talk about it.
[00:14:29] Audrey Curwin: Right.
[00:14:30] Carole Blueweiss: And how long was that, did that thinking phase last?
[00:14:34] Jillian Curwin: It was very on and off. We talk about it. Decide not to do it. And that was kind of it for a while, but I think it probably was like a couple years I, on and off, I deliberated about it.
[00:14:45] Audrey Curwin: Yeah, yeah. And it was definitely like, theoretically, you should do it before you hit 12 and 13 because you have to do it.
[00:14:53] Jillian Curwin: You have to do it while there’s room in your growth plates, right?
[00:14:56] Audrey Curwin: Right. So, you know, in your home, everything’s loving and you can, it’s like a reality that hits you in the face when you start like in middle school and stuff like that.
[00:15:04] Jillian Curwin: Yeah.
[00:15:05] Audrey Curwin: ‘Cause people are not kind. So that’s when now there’s this greater need to wanna fit in and not to be different. The problem is now you’re making a very, very emotional decision made by a preteen or a tween. And you’re almost at the borderline where it’s almost too late and you have this fear of like, well, okay, maybe I should have done it when she was little.
[00:15:30] And now she would’ve been happier with me as a parent. But then you said, well, what if I did it when she was little? And she’s like, well, I never would’ve done this. You know, like, why would I be half little person, half not a little person? Basically, I wouldn’t have made that choice. So parents are kind of stuck making these choices for children that clearly are lifelong choices, but you have no idea, no idea if you’re making the right choice ever. Not doing it, you don’t know if you made the right choice. Doing it, you don’t know if you made the right choice. ‘Cause every child is different. And during those times when it was emotional, when you wanted to do it, it was never because, oh, you know, woke up this morning, feeling great, I think about limb lengthening. It’s always reactionary to what’s going on in the life of the tween or whatever.
[00:16:18] Jillian Curwin: Mm-hmm .
[00:16:19] Audrey Curwin: So it makes it that much harder because it is a permanent decision. And back then, there wasn’t long-term studies on any of this and I’m glad we never did it. I don’t know if you feel that way.
[00:16:33] Jillian Curwin: Yeah.
[00:16:33] Audrey Curwin: I think you do, but I’m glad.
[00:16:35] Jillian Curwin: Yeah. Even though I wasn’t of age to make my own medical decisions and it really ultimately would’ve fallen to my parents whether or not to do it, but my voice was being heard. I could at least say, this is how I’m feeling. This is why I’m considering it. The end of the day, they decided but it was like a decision that they could make with me.
[00:16:56] Whereas I think there other, I don’t wanna call them treatments, but I think that’s kind of what the medical community is calling them, for dwarfism that you would have to give to your child when they really aren’t, can’t be part of the conversation. They’re just too young. So at least, in that sense, my voice was still able to be heard. And again, I don’t regret not doing it.
[00:17:23] Carole Blueweiss: Do you know others that have done it?
[00:17:25] Jillian Curwin: I know of a few people who’ve done it before. From what I know, I don’t know them well, I’ve just kind of seen them around, but they see, they’re walking around, they’re doing things like the rest of us and they’re still at LPA. So I think, I remember there’s like a shirt, the mid two thousands going around, it’s like from LPA, it’s like the seven things you can’t say at a convention. And two of them were limb lengthening. When we talked about it when I was younger and like considering it, my voice at least got to be heard. I wasn’t 18, so I couldn’t make the ultimate decision about what to do with my body, but at least I could be heard when talking about it and when deciding what to do.
[00:18:02] Now, and this is, it just recently happened, there’s a drug that got approved by the FDA, which is kind of being advertised as a cure for my type of dwarfism. And, but you have to give it to your child when they’re between the ages of two and five. And there, your child is probably not aware that they are a little person, for one. And two, even if they are, they don’t really get, they’re not getting heard. And that’s not something that’s also like, not reversible, like once you do this, there’s no going back. So I think in those situations, in that situation, like, I think that’s a little bit harder to deal with. Because again, like the child doesn’t get to say, the child doesn’t get to be heard in that situation. But you’re doing something that is ultimately gonna affect your child for the rest of their life.
[00:18:56] And also it’s implying that dwarfism needs to be cured, which I personally don’t believe it does. I don’t think dwarfism is a disease. I think it’s just, it is a disability, but it’s not a disease.
[00:19:12] Carole Blueweiss: So more choices for parents now than, Audrey, when you were a parent?
[00:19:18] Audrey Curwin: Yeah, but it’s still really hard because these are all very emotional decisions and your child is healthy. A lot of dwarfs have health issues, but for the most part for achondroplasia, they’re healthy children. You know, they might need leg straightening and they have ear infections and stuff like that, but they’re not at risk of, you know, they’re expected to have the same life expectancy as the rest of us.
[00:19:47] Jillian Curwin: Right.
[00:19:47] Audrey Curwin: So you have this healthy child that you now feel needs to be, like Jillian said the word cured and you’re like cured from what? But there’s so much emotion involved in it. When I got pregnant with Jill in June of 1994, is that right? Yeah.
[00:20:09] Jillian Curwin: Yes.
[00:20:09] Audrey Curwin: March of 1994, they discovered the gene that Jillian was talking about, the one that like flipped on the genome. And they were like, this is great because if two people have achondroplasia and they have a child together, there’s a 25% chance that the child will have what’s known as double dominance, which means that they get the dwarfism gene from both parents. And it is a dominant gene, so that child actually will not survive.
[00:20:38] So the idea was before that, people would actually be assigned like a grief counselor when they got pregnant. So that way they could be prepared should their child be born with double dominance. And ’cause nobody knew. Once they figured out where that gene was, they can now do amniocentesis.
[00:21:00] And the fear was that they would be aborted out of society. Like if you knew, it became a part of regular testing, would people then opt for the abortion and say, I don’t think so. And they were afraid that you were aborting basically healthy children. And, you know, it’s like saying a little different, but kind of the same argument, I only wanted blue-eyed children. So if I find out my child has brown eyes, I’m not gonna keep it. It’s that same kind of idea. I wanted an average size child, but it’s not. So I’m not gonna keep the child. I don’t judge anybody for doing whatever they do. I just live my own life, but I couldn’t imagine, you know, finding out that your child might be a little person and go well, that’s it, you know, ’cause they’re wonderful.
[00:21:51] And you know, it’s not what you’re expecting because it is the unexpected, you know, like I said, I got the book What to Expect When You’re Pregnant, What to Expect the First Five Years, you know, there’s all these ideas that collectively we agree on. This is what’s gonna happen. And then it’s different. And you’re like, okay, but different doesn’t mean bad. But there is that adjustment because you’re just not expecting that news.
[00:22:16] So there’s definitely a time where you go, well what does this mean? What does this mean for my child? And it’s not bad. It’s just honest. You’ve gotta go through that. ‘Cause you don’t know anything about it.
[00:22:31] Carole Blueweiss: Is there anything that you know now that you wish you knew then, when you were raising Jillian?
[00:22:37] Audrey Curwin: Oh God, [laughter] a lot. Well, I wish I knew how to sew. That would’ve been helpful.
[00:22:44] Jillian Curwin: Yeah.
[00:22:46] Audrey Curwin: We were told when she was born, like they do have more fragile necks and spines. There’s a lot of them that end up with spinal stenosis and things of that nature because of the design of their spines. And we were very, very frightful that whatever we would let her do necessarily would cause not necessarily current injuries at the time, but would it create a higher risk of arthritis at a younger age or something like that? Because when we were there at the beginning of LPA, there were a lot of people that were in their forties, which is fairly young, that had a lot of orthopedic problems. And a lot of it was stemming from what happened when they were younger.
[00:23:31] I do wish we were a little more relaxed when it came to things like that, to just let her be a little more go for it kind of thing. Like she wanted to do gymnastics and we’re like, there’s just no way. And we probably should have compromised on that. Like yes, do gymnastics. But you know, be more careful, being more aware of this problem. But we were too frightened to let her do that.
[00:23:54] Carole Blueweiss: Are you saying that there were things that maybe now, in retrospect, you were a little over cautious that you wish you had given in a little bit so that she would’ve gotten the pleasure and the confidence from doing those activities?
[00:24:05] Audrey Curwin: Definitely, yeah. And again, like I said, you know, we…who knew? You know, like, I don’t know, we just didn’t wanna do anything that was going to cause her any kind of harm as an adult. So you didn’t wanna say, well, we should never have let her do this. You don’t want your kid doing anything, any parent, that’s gonna create difficulties for them later in life.
[00:24:31] Carole Blueweiss: Right. But I wonder if you would change that now because you still, I mean, that’s a very reasonable concern and that’s the role of a parent to watch over. And you knowing that there’s that predisposition to injury, you were protecting your child.
[00:24:45] Audrey Curwin: I think we would’ve just tried to compromise more, like allow her to do a little more, but find a way to make it where we still felt confident that she would be okay.
[00:24:58] Carole Blueweiss: Less anxiety.
[00:25:01] Audrey Curwin: Yeah, yeah.
[00:25:03] Carole Blueweiss: What about you, Jillian, is anything you wish growing up that you know now that you wish you knew then?
[00:25:13] Jillian Curwin: I think the biggest thing that I can think of right now is understanding that a lot of the problems I faced as a little person wasn’t necessarily because I’m a little person. And that a lot of the barriers and a lot of the obstacles that I had to overcome were created by the society I lived in and the environment and that I wasn’t to blame because of just the body I had. I was the first little person in my school district, as far as I know, so they didn’t know what to do with me. So I think at the beginning they were overly cautious and they gave me accommodations that I didn’t necessarily need.
[00:25:56] For me to say, no, I don’t need this. I can do this. I think I internalized a lot of the problems I face in putting ’em all on me and saying they were all my fault when realizing that there are a lot of other factors at play. And now that I’m older and more in the advocacy space, I realize that now I would also tell my younger self to listen to my mother more. There was a period of time where I really just did not listen to her. And I think that even now, I’m still sometimes dealing with the effects of in certain situations.
[00:26:27] Carole Blueweiss: Could you give an example?
[00:26:29] Jillian Curwin: Yeah, we’ll go there. Why not? Growing up, I was always told as a little person, I could gain three pounds a year, and that was again to prevent long-term health problems later on from having too much weight on my body. I never felt that I was being restricted or like, couldn’t do anything. ‘Cause like I could still go to birthday parties and have cake with my friends. I started having constant ankle pain that no matter what we did would not go away. It caused me to become more inactive and it took about a year and a half for my doctor to finally say, okay, we’ll do surgery. A different version, but the same procedure of straightening my leg, which fixed the problem of the ankle pain.
[00:27:12] But I was still a lot less active. I had to give up dance at the time. I gave up softball. I was sitting out of gym. It was one of like our post-op appointments, where I was told that I had gained.
[00:27:25] Audrey Curwin: You were older than that. ‘Cause it was after your bat mitzvah.
[00:27:28] Jillian Curwin: I guess it was like a year after surgery.
[00:27:30] Audrey Curwin: Yeah.
[00:27:31] Jillian Curwin: From what I remember, still eighth grade.
[00:27:32] Audrey Curwin: Right.
[00:27:33] Jillian Curwin: And I was told I had gained basically a pound a month instead of three pounds in a year. So I had internalized that I felt a lot of disappointment from everybody, not just from me. Like I had internalized it as everyone was disappointed in me. I screwed up. And I, at first, because and then my mom, like she was trying to help me and to, I realize now she wasn’t necessarily telling me I had to lose the 18 pounds tomorrow, which is kinda like how I felt. And I just fought against that. I was just mad. I didn’t wanna, you know, anything she said, I was like, no. It was more like, okay, we just need to…going back to the original point of not having health problems later on. And there’s a period of time where I just resisted going to the gym when she would suggest me to go. I would resist basically any form of diet and exercise and trying to get back to something that was a lot more healthy because my mother was telling me to.
[00:28:35] I knew I should have listened to her. Like that was thing, I knew I needed to listen to her. I knew that, but I think I had just internalized it and it led to a lot of…on top of me just being in puberty and going through, you know, going through puberty and going into high school, I think it just all piled onto each other. And I think that was probably the period of time where we fought the most.
[00:28:55] Audrey Curwin: Yeah. And, I mean, a good part of the weight gain was like, you know, breasts developed and all these other things, like everybody goes through that.
[00:29:02] Jillian Curwin: Right.
[00:29:03] Audrey Curwin: So that part was fine. I thought I had always been very, very clear and very honest about the fact that everything’s got a healthy impact. I never ever, I don’t think, ever spoken in terms of body image or anything like that.
[00:29:20] Jillian Curwin: No.
[00:29:20] Audrey Curwin: Ever. But I think it just was difficult because it’s a difficult time for teenagers anyway. Nobody likes how they look in the mirror, no matter who they are when they’re at that age. It’s also very common, I think, that frustration like between boys and their fathers and daughters with their mothers, that there’s more friction during that time. So I think it just kind of highlighted those problems.
[00:29:46] Carole Blueweiss: So, Jillian, how did you end up coming to a resolution for yourself?
[00:29:53] Jillian Curwin: I had a very emotional breakdown in school lunch one day. Piling onto this, this was the time where I was really trying to be like my average height friend. So this was also at the same time where a lot of the accommodations I had made in school, I said with transitioning to high school, I don’t want. I don’t need it. I don’t want it. I wanna be like everybody else. And I saw my friends, they were eating what was normal for them. And I just wanted to be like them. Not necessarily doing what was right or healthy for me. So I think that compounded that. It was sophomore year lunch. I had a doctor appointment in two weeks. I had an emotional breakdown ’cause I was like, I need to lose 20 pounds in two weeks. Because I thought everyone was gonna be disappointed in me again. And I didn’t wanna feel like that. Did I need to lose 20 pounds in two weeks? No.
[00:30:44] Audrey Curwin: You didn’t even need to lose the 20, but go ahead.
[00:30:46] Jillian Curwin: That’s what I, that was though what triggered.
[00:30:49] Audrey Curwin: Right.
[00:30:50] Jillian Curwin: That was like me just kind of like sitting at lunch with my friends one day. And one of my friends who’s known me our whole lives basically, so she knew the struggles I was going through with my mom and what I had gone through before and everything. And I just had an emotional breakdown and was like, I need to lose 20 pounds in two weeks.
[00:31:09] I didn’t like go drastic, like trying to do it in two weeks. ‘Cause I knew I wasn’t gonna be able to do it, but I think that was kind of like, okay, I need to really figure out what I need to do and listen to my mom and realize that she’s not doing this to punish me. It’s just, this was not healthy, what I was doing.
[00:31:28] And so then I think that started a change. Then I might have at some point taken it…no, I did take it a little too far in the other direction. That I think came from not wanting to feel that disappointment again. Dr. Mackenzie wasn’t disappointed in me and that I had failed him because it was like, it’s my body. He just was looking out for me.
[00:31:48] Carole Blueweiss: Right. So it’s ironic because what the voices in your head or your emotions allowed you to then see that what your mom was saying was a way for you to do this very drastic or 180 degrees the other direction, which wasn’t necessarily necessary or healthy, but
[00:32:08] Audrey Curwin: No.
[00:32:08] Carole Blueweiss: But you used your mom’s advice to go in that direction. So it’s just interesting, right?
[00:32:12] Jillian Curwin: Yeah. And never did she push me to like, keep like push harder. I think it was just me, again, liking how when I went to the doctors and was being told that I had was back to healthy in terms of weight and not wanting to, I think it was in fear of regressing and going backwards.
[00:32:33] And again, this is also being the only little person. And not having anyone to identify with and tell me, this is what I can do. I think it turned into that sort of fear of these are what my average height friends are doing. I don’t know if I can do that. I don’t know if that applies to me. And that was, purely came, like that was me internalizing and me having this debate with myself that didn’t come from anybody else.
[00:32:50] Carole Blueweiss: Are you talking about food when you’re talking about what they could do and you couldn’t?
[00:32:54] Jillian Curwin: Food was the big one, I would say, but also like working out. Like doing cheerleading and I wanted to do it. I see them doing it. Why can’t I do it? Why can’t I start to do it? So, yeah, I think that was, I think probably at that time when I went and the food was definitely the biggest one that I kept saying, well, my average height friends are doing it. I don’t know if I can do it. ‘Cause when I did it before, when I, that’s when the weight gained. I didn’t know what…I kind of lost sight of what being a healthy little person was. It took some time then to find the balance again.
[00:33:26] Like I think had I listened to her after that first doctor’s appointment and realized what she was really trying to do, I think a lot of those struggles wouldn’t, at least I would hope like a lot. I wouldn’t have had to face a lot of those struggles. I was being a bratty teenager.
[00:33:42] Audrey Curwin: Yeah.
[00:33:43] Jillian Curwin: I was being a bratty teenager.
[00:33:44] Carole Blueweiss: Is there anything else either of you would wanna add to this little discussion we’re having here that hasn’t come up because I didn’t ask or anything you wanna say to the public out there or to each other?
[00:33:56] Audrey Curwin: I think that this podcast deals with disabilities and mothers with children with disabilities and stuff. And I think that many of these mothers are very special and they kind of deserve a medal because these kids are amazing. I do believe that the emotional support that you give them when they’re young, it gives them the strength.
[00:34:18] They may not realize it at the time, but as they get older, it’s that foundation that they’ve had since they were little that lets them be the best that they can be. You know? And I think that it is harder for parents with children with disabilities, mostly because there’s a lot of unknown and there’s a lot more struggles that are involved with it. I do think that these parents are like heroes to their children. So for a lot of them, maybe not me so much, but for many others, I think they are.
[00:34:49] Carole Blueweiss: Well, apparently, you know, you gotta listen to this podcast, okay? So Jillian, anything that you’d like to say that I haven’t asked?
[00:34:58] Jillian Curwin: I would just say, and this goes to, I guess I’ll speak to the disabled children who are listening. There’s still such a fear of disability when it’s really not scary, ’cause disabled people are living their lives every day. So I think it’s just figuring out how do you make it work in this world? And this world is very inflexible. It is very, it’s inherently ableist.
[00:35:23] There’s a lot of barriers put in place by society and the environment that maybe don’t wanna be broken down, but they can be overcome. Just to not be afraid to be yourself. Don’t let anyone say that they know your body better than you because they don’t.
[00:35:41] Carole Blueweiss: And I feel like you’re also speaking to not only people or children who have diagnosed disabilities or feel that they have a disability, but also to those so-called neurotypical or normal or ableist people out there that are fearful of people who have disability. Maybe more so than the people that actually have the disability, right?
[00:36:01] Jillian Curwin: Yeah, I’m speaking to you guys, too.
[00:36:03] Carole Blueweiss: Yeah.
[00:36:04] Jillian Curwin: Yeah, I’m speaking to you guys, too.
[00:36:07] Carole Blueweiss: Jillian, who do you look up to?
[00:36:09] Jillian Curwin: Obviously, my mom, always. Again, like I said, that even when we, even when we fight and I’m usually wrong. Or even when we fight or argue, like, she’s my best friend, my go-to person. I do recognize that I was the first child, I was also a little person. Like I was a lot to process. Just recognizing what she and my dad did in raising me and what she’s continuing to do now. I look up to her every day for that. And then in terms of outside of my inner circle, just people who empower me, there’s a lot. But I would say Rebecca Cokley and Judy Heumann, who are leaders in the disability rights movement, and are really working every day to make a difference and to advocate for disability. And as I’m aspiring to follow in their footsteps, I continuously look up to them.
[00:37:03] Carole Blueweiss: Audrey, how about yourself? Who do you look up to?
[00:37:06] Audrey Curwin: Definitely Jillian. I think Jillian is a tremendous role model. For many reasons. One is just because of everything that she’s gone through. And I know that a lot of teenagers and stuff, they all go through issues and turmoil and everything else, but it’s how we come out of it at the opposite end. And some of us learn and some of us don’t. And she definitely did it in such a mature way that she’s also helped so many other people along the way.
[00:37:38] I also think that for me, just watching her develop into the woman that she’s developing into, like this woman that is powerful and emboldened and, you know, wants to make a change and not only wants to make a change, but I believe in my heart, she will be a game changer because nothing stops her. And she’s more brave than I’ve ever been. She’s more confident than I ever was. So she’s truly my role model.
[00:38:06] And the rest are like my sister who I love and, you know, people that I know personally that have just done so much for so many people, but she’s really my number one.
[00:38:17] Jillian Curwin: Aww.
[00:38:18] Audrey Curwin: She does. Yeah, she does it all. She really does. She’s amazing. She’s good in every way.
[00:38:27] Carole Blueweiss: Do you guys wanna end the way Jillian ends her podcast?
[00:38:31] Jillian and Audrey: Height is just a number, not a limit.
[00:38:46] Carole Blueweiss: Always Looking Up can be found on Apple Podcasts, Spotify, or wherever you like to listen to your podcasts. I highly recommend you tune in to these engaging and far-reaching conversations. More links about Jillian and how to learn more about her and to reach her can be found in the show notes.
[00:39:04] Andrew Solomon points out that even though the medical condition of dwarfism is recognized by the Americans with Disabilities Act as an orthopedic disability, and even though the classification usually grants social assistance, legal protections, and special parking spaces, there is no law that requires supermarkets to provide a means to retrieve merchandise from high shelves. And legislation does not consistently mandate that gas pumps or cash machines, for example, be installed at a height that makes them accessible to little people.
[00:39:40] As I was working on this episode, Peter Dinklage, the award-winning actor who has achondroplasia like Jillian, lambasted Disney for their idea to produce a new version of Snow White and the Seven Dwarfs. Yes, they are casting a Latina actress as Snow White, but why recreate an old story that puts down a group of human beings? And why risk reinforcing harmful and one-dimensional stereotypes of little people?
[00:40:09] Disney is not the only culprit to dangerously stereotype little people. Solomon points out, and these are his words, “there is a relentless visibility of dwarfs that is amplified by their iconic place in fairy tales as supernatural beings, a burden not shared by any other disability or special needs group.”
[00:40:32] Jillian’s visionary perspective and her recreation of Disney princesses on her terms, revealed in episode two, shows the timeliness of this debate. And Jillian’s transparent message that needs to be told now more than ever. I have no doubt that Jillian’s continued creative advocacy will lead to more appropriate representation of all people with disability.
[00:40:58] The opinions mentioned in this in the last two episodes are not meant to constitute or serve as a substitute for professional psychological or other types of advice or intervention. If you have any concerns about your child’s well-being, please consult a physician.
[00:41:13] And thank you so much for listening to Wisdom Shared. If you enjoyed this episode, please be sure to check out all the other episodes. Go to caroleblueweiss.com or to wherever you listen to podcasts. If you like what you are hearing on Wisdom Shared, please spread the word and share this podcast with your friends, your family, and anybody else. Leave a review and follow Wisdom Shared so you can receive wisdom every month. Thanks for listening.
