[Transcript of, "Parenting Without Pity: Ellen and Emily", produced by Rooted in Rights] SPEAKER 1: Rooted in Rights is partnering with disabled parents to tell our stories of parenting without pity. SPEAKER 2: If I would've had parents that were aware of disability rights, it would've taken me less time to realize that, like, I could be a mom. SPEAKER 3: We have to have conversations we are not having. SPEAKER 4: There are real world consequences to you not giving your kid the tools to understand where they are in America. SPEAKER 1: This is a space for disabled parents to talk parenting and to offer compassionate and frank advice about what it means to raise a child with disabilities. In this episode, Lead Producer Clark Matthews and Program Director Anna Zivarts interview Ellen and her daughter Emily from Long Island, New York. ELLEN: Hi, my name is Ellen Ladau. EMILY: Hi, I'm Emily Ladau. ELLEN: I'm mom. EMILY: I'm the daughter. ELLEN: And I am a 57-year-old white female of Jewish ethnicity, and I am also a disabled woman who was born with Larsen Syndrome, which is a rare musculoskeletal disorder. EMILY: And I am a 27-year-old white woman. I have long, brown, curly hair. I'm wearing glasses, so is my mom. She didn't mention that, and we look pretty similar. ELLEN: I'll do it, Emily. People often confuse us for sisters. EMILY: Much to my chagrin, but that's okay. ELLEN: Because my hair color is Clairol 4R. EMILY: Mine's real. [laughs] ELLEN: Okay, so we live in New York on Long Island, and Emily has only lived in Long Island. And I've previously lived further upstate in New York, in Rockland County and then in Queens, where I lived when I met my husband, her father. EMILY: So we're both born-and-raised New Yorkers. ELLEN: Born-and-raised New Yorkers. I have Larsen Syndrome, which is a congenital joint dislocation disorder. That means that we were born, both Emily and I, with dislocated elbows, knees, hips. We have limited range of motion in our arms. We have limited range of motion in our knees, foot deformities. We're told that we have a classic Larsen Syndrome face which is a high, wide forehead, a depressed nasal bridge, and wide-spaced eyes. We both have hearing impairments and wear hearing aids. We've both had a lot of surgeries, and we both currently using a wheelchair full-time. My main identity is wife and mother. EMILY: Good wife, good mother. Thumbs up. ELLEN: And what's your major identity? EMILY: That's a tough one. I am a disabled woman, a professional, disabled woman. ELLEN: Yes, that I definitely agree with, and she's kind of brought me along for the ride. I think as she matured, like I said, I came along for the ride. My ideas changed. We also should mention Dad. I'm married. I've been married 30 years. Emily came along three years into our marriage. We have extended family. I have two brothers, one older, a retired pediatrician, and my younger brother, interestingly enough, also has Larsen Syndrome. I do think it's important maybe, for the discussion, to say that I was not anticipating having a child with Larsen Syndrome. I was told that it was basically genetically impossible. So when it turned out that we learned when I was 20 weeks pregnant, that Emily did have Larsen Syndrome, a lot in our world changed. EMILY: And I would say, perhaps initially for the worse, until I sort of grew up and flipped the script that you'd been given. ELLEN: Yes, I dealt with a lot of issues, particularly with guilt, even before she was born. And then after she was born, I mean, no parent wants to see their child in pain or suffer, and she underwent surgeries and was terrified of cast saws and things like that. So that was very painful to me as a mother, and so I struggled with a lot of issues until I actually saw how much Emily embraced her identity as a disabled woman. And I think it actually allowed me to do that for the first time. Thank you. EMILY: You are so welcome. No, I think that a really important factor in my upbringing was that when things started out, everyone was sort of using scare tactics, right? Everyone was saying, "She's never going to do this, and she's never going to do this, and she's going to be flawed in this way, and this way," and they immediately come at you with every worst-case scenario, rather than with resources and support. ELLEN: Well, that was because we were told very early on that you had a potentially severe cervical spine abnormality, but what I was talking about in terms of resources is that, just a couple weeks after you were born, I was visited by a public health nurse, and they said that children with movement disorders are at risk for learning delays, and, "Do you want early intervention services?" And I was like, "Well, sure. I'll take whatever assistance I can get," and pretty much from when you were three months old, we started with PT/OT and speech, and to this day, you still have physical therapy. And that's not something that was available to me as a child. In fact, one of my memories is after one of my surgeries, my doctor wanted me to do exercises, and he actually told me to take a pocketbook or a tote bag and go outside and find a bunch of rocks, and every day, add one more rock. So you could see how things have evolved. I'm 30 years older than Emily, so that in itself shows a very big evolution in how many resources are available. I think a large part of it is you have to know how to navigate the system and how to get those resources, and unfortunately, not everybody knows that. EMILY: And unfortunately, getting those resources is still framed with a very negative view of disability. ELLEN: Right. Anna: Ellen, was there a moment when you were raising Emily where you had this...the first time you sort of were like, "Wow, she's going to be okay. This is going to be great, actually." She is taking this identity and doing things that you probably had never imagined she would do as a disabled activist or as a - ELLEN: It kind of happened gradually. I mean, she went to college with the idea of becoming a high school English teacher, and then she tells us in junior year, "No, that's not what I want to do. I want to become a disability activist." And my husband and I are like, "Oh, great, but what is that, and how do you do that?" And luckily- EMILY: Don't worry, I had the same question. ELLEN: Yeah, well, luckily she had the wherewithal and the motivation and drive to create that career. For me, so it wasn't one single moment, it was sort of an evolution, but seeing her being presented with the AAPD Award in honor of Paul Hearne, that night blew me away. That was when it really like, "Wow. This is real. This is happening, and people consider her a big deal in the disability community." EMILY: Eh, not that big of deal. But more to the point, at what point did it go from me driving you along kicking and screaming to you being like, "Yeah, disability activism?" ELLEN: Once Emily announced her career plans, I had known of an organization called Suffolk Independent Living Organization, and I actually encouraged her to apply for a summer internship, which she did. And as part of that internship, she invited me along to speak about our experiences as a disabled mother and daughter. And I think that's when I realized that I was coming along for the ride. Anna: Was there a moment, Emily, when you realized what it meant to have been raised by someone who shared a disabled identity, or shared the same disability with you, that you were excited about, or...? EMILY: I've always felt very lucky to have been raised by a disabled mother. I don't feel like it was ever something that I viewed as a negative. And it wasn't really until I started realizing that other people viewed it as a negative, that I started to wonder if that was true, and if I somehow had a very unfortunate fate because there were two disabled women in one family. And - ELLEN: Maybe not a negative but an oddity. EMILY: Yeah, well, definitely an oddity. People always thought that it was kind of weird, kind of strange. Nobody ever stopped to consider how awesome it is. And so now, I've devoted myself to explaining to people that there is no better feeling than having someone who is related to you, in the same household as you, raising you, and also looks and moves just like you. And that always normalized disability for me, in a way that it's not for a lot of people. ELLEN: But have you ever thought of, what if I didn't have Larsen Syndrome, and my brother didn't, and you were the first generation with Larsen Syndrome? Have you ever thought how that would be different? EMILY: If I hadn't grown up around disability, I don't think I would have become the activist that I am, simply because kids with disabilities are not exposed to positive role models with disabilities as often as they should be, whereas I have them genetically built in. So I really do think that my identity is only a matter of circumstance, and that's not to say that you were brimming with disability pride over here, based on your upbringing, simply because you were pre-Americans-with-Disabilities-Act and a lot of attitude and all things needed to change first but - ELLEN: And environmental. When I grew up, I really didn't see a lot of people with disabilities other than my brother. EMILY: Yeah, and one other kid in school, right? ELLEN: One other kid in school, I remember. Yes. EMILY: And for me, there was also that, "Oh, there's only one or two other kids in school," but then I would come home every day to someone who really gets it. And - ELLEN: And we also sent you to a summer camp for kids with disabilities. So you got to experience both worlds. EMILY: Yeah, I think my parents really sought out opportunities to make sure that I was comfortable with myself and who I was, and even though I happened to be lucky in that I have a disabled mom, even if a kid with a disability doesn't have a disabled parent, I still think that it's so important for that parent to seek out opportunities for kids to be around disabled people and have those positive role models. ELLEN: Yeah, well said. Clark: Well, Ellen, I'd love to hear you say a little bit more about going back to your childhood and how your parents interacted with disability, and how that's different compared to now and what Emily's going through. EMILY: That's a good question. ELLEN: Well, it's interesting, being that I was the first disabled child in my family. Initially, when I was born, there was a lot of confusion as to what my future held. And some relatives even suggested that I be placed in an institution, but my parents thankfully rejected that. But even so, there were challenges and situations that I think are handled very differently today. I mean, my father had to fight to get me into a mainstream elementary school, and there was also at that time, no understanding that adaptive physical education should be made available to me. I was exposed to a lot more bullying, I believe, than Emily was, exclusion, and that's why when we learned that Emily was going to have Larsen Syndrome, it was so difficult for me. Because that's what I envisioned her future to be. And that was hard to imagine. I remember how bad I felt when she had to get her first wheelchair. She was the one who finally made me understand that, "Hey, Mom, walking with this walker and braces is too tiring. I need a wheelchair so I can enjoy activities rather than just focusing on ambulating." And as soon as she made that clear to me, I realized that my experiences would have been so much different growing up, particularly in college, if I had a power wheelchair like she had, because there was no understanding back then that I could ask them to move a classroom that was on the third floor that I had to trudge up, or put classes closer together in a building. But what happened is by nine or ten o'clock, I was so exhausted from my day that I wanted to go to sleep and recharge, when the parties were just starting. So it caused social isolation and exclusion for me. So when she was born, I couldn't imagine because I don't think I had ever seen a power wheelchair. So it's been a huge difference and experience that 30 years has made, with the ADA and just the societal attitudes, and I so definitely think her experiences have been different. And because of that, I think that's what's allowed her to embrace her identity more, because you haven't consistently faced isolation or exclusion. Yes, there have been some times when she hasn't been able to get into a friend's house for a party. And yes, there were some difficult moments, particularly in junior high. EMILY: But that theme is true for every kid. ELLEN: For every kid, I was just going to say that. And we've had our moments. One minute we can be annoyed with each other, and the next minute we're hugging it out. But that's a typical mother-daughter relationship, so I don't really...in our day-to-day lives, we don't really view each other any differently. The only thing is we might ask each other to help us out with tasks that you might not think of, like, she'll help me with footwear, or I'll help her reach something that she can't reach. But to that, that's just our normal, just like every other family has their normal interactions. That's our normal. And when her dad's home, he kind of knows that he has to be the one to get things because it's just easier for him, rather than us transferring from one chair to a wheelchair or whatever. But like I said, it's just our normal, and please tell me if I'm rambling on. Clark: This is great. I'd be interested in hearing more, Ellen, where you talk about that fear that you had at the beginning because that's something nondisabled parents say a lot, like mourning the child you didn't have. And that can be something that can be really damaging to kids and for parents as well. I'd be interested in getting your take, on how do you think your apprehension was similar and how it might have been different from nondisabled parents' fears? ELLEN: It has been asked of us on several occasions, that once we found out that I would indeed pass on Larsen Syndrome, if there was ever a thought of terminating pregnancy. And while I support a woman's right to choose, it wasn't a choice that we were going to make. I think...I worried more about the social issues while I was still pregnant, but the shift so immediately became medical once she was born, because we were told about a cervical spine abnormality, which could basically paralyze or kill her at any moment if she had a sudden impact injury like a fall, or God forbid we were involved in a car accident. It would be much more risky for her. So I think when she was young, it was more that we were consumed with the medical appointments and lived with a lot of fear and anxiety. And actually, this week is the 10th anniversary of the major spine surgery that she had to finally correct that spinal deformity. So what parents are going to experience initially is a whole range of feelings, but depending upon the severity of the disability, what's going to take over is just the medical world. And that was just, for me, it was just fear and anxiety from one appointment to the next. Will this be the one where she needs surgery again, and so on. EMILY: I think that's completely normal, but I also think that along the way, no one ever stopped to say, "Hey, something is going to be okay in all of this." I feel like that's the part that's always missing, is there's an immediate fear when a parent finds out they're going to have a kid with a disability. The fear continues after the kid is born, and there's no focus on any sort of positives, because you can be consumed with a lot of the negatives. ELLEN: Right, and I was initially. When a barrage therapist came and told me, "This could happen, this could happen, she's at risk for this," It really wasn't until I saw your personality emerge, that's when...well, I still have the medical concerns, that's when I knew you were going to be okay, because you had such a great personality. EMILY: But I don't think we ever give parents the opportunity to see that far ahead. ELLEN: Yes, it's hard. EMILY: There is no seeing the forest through the trees, and that's not to say that the challenges that come with disability are suddenly going to stop when your child gets older. Not at all, but it is to say that, I think parents have this fear instilled in them, largely based on how society perceives disability and then - ELLEN: And then all the individualized medical concerns and become all consuming. EMILY: And you forget to take a step back. ELLEN: Yeah, enjoy your child. Emily used to wear a neck brace, and I'm embarrassed to admit, but I wanted her annual portraits at least, without the neck brace. I mean, I probably, if you were wearing the neck brace now, I probably would still do that today, but I don't know. EMILY: See, I don't know if I would, is the thing. I feel like I would have probably wanted to come to terms with how something appeared on me, but I guess I can understand a parent being concerned about how their child presents themselves to the world, but at the same time, if it's something that's literally saving my neck - ELLEN: Yeah. No, I mean, day-to-day activities, I would take the candids. I'm just talking about that one special, annual picture, that I probably would do that. EMILY: Yeah, that's interesting though, because would you consider that part of me or part of my identity? That's a hard-hitting question. ELLEN: These are very complicated issues [laughs]. I didn't know I was going to be delving this far. EMILY: Don't worry. They don't have to include this. ELLEN: It feels like a therapy session. No, I don't know, maybe...that's a tough question, and I think maybe one other point that's interesting to bring up, to understand our dynamic, is that people tend to think of disability as a very static thing. You're born with this, and you just have this. In my case and probably most people's cases and in fact everybody's case, your abilities change as you get older. And for me, the nature of my disability changed because I was a parent. Particularly, I think it would've been hard to be a parent, I think, of a normal toddler, because it would be hard for me to keep up with them running around. But it was hard for me to deal with having to lift Emily a lot, and that created issues with my back, and so on. So the nature of my disability changed as she got older. ANNA: When you were raising Emily, were there things you did to try to make the world accessible for her, recognizing that at the same time when she entered the real world, it was going to be hard? Or how did you balance wanting to make the world as accessible as possible, versus wanting her to learn the skills she would need to navigate a world that wasn't always going to be built in a way that would be accessible? ELLEN: Well, accessibility I believe, first starts at home. So we gradually had to renovate our house to accommodate her changing needs, and luckily, those changes also benefited me. As she got older, it was just a matter of dealing with the school and talking about...elevators were a big part of conversations, because they were old school buildings and old elevators, and that created a lot of issues in terms of accessibility. I always argued to try to have as many of her classes downstairs, because we were worried about in case of emergency. But the reality is that most of accessibility is something that we had no control over. The biggest issue was her getting into a lot of friends' houses, and you can't tell these people, "Put in a ramp," or, "Take away your 15 steps." What we did is renovate our house in a way to give her as much space as possible, and to make our home as welcoming as possible to her friends, so that in itself would help avoid or reduce the social isolation by just physical barriers. EMILY: What about the advocacy side of it though? ELLEN: Oh, yeah. I yelled at a lot of people [laughs]. I have a health insurance background, so let's just say I had a lot of fights with a lot of insurance companies about coverage issues. I had to deal with a lot of issues with the school district to just make sure that her needs were met. And then, once she became older, she made it clear that there were things that she didn't want, like she no longer wanted an aide to follow her around. EMILY: Yeah, a paraprofessional. ELLEN: Yeah, a paraprofessional. She hated that. She felt it interrupted her relationship with her friends, and so we advocated for the school to allow another student in one of her classes to help her to her next class. So I mean, it was definitely a partnership. I advocated for her when she was too young, and when she was old enough, I think maybe because she watched me, she was able to advocate more for herself. EMILY: Definitely seeing that it was okay to speak up for myself, is something that I can't put a value on, because that's the only reason that I knew it was okay to say that I was not okay with something or that something needed to change. And that's probably one of the best things you could do for your kids, is show them that they absolutely have a right to speak up for themselves, and also to know when you need to stop being the only one to speak up for them. I always say in whatever way your child might communicate, it's important to invite that communication to the table when you're focusing on any advocacy-related issues. And my mom always did that for me, as soon as I was old enough to have any input in anything, even if it was annoying 4-year-old input, I was still at the table. ELLEN: Right, although I still to this day have to learn to sometimes not speak for her [laughs]. That's hard. EMILY: That's the parent's struggle [laughs]. ELLEN: That's the parent's struggle, yes. I have to recognize she's an adult and that's hard. ANNA: I think the last big, broad question would be, and you've touched on this a bunch already, but advice for parents of disabled children who may not themselves be disabled and may not have that framework, anything in general? Even very specific, like parents with kids with Larsen Syndrome. If you want to get specific, that's fine too. ELLEN: Specifically, if you're looking for information about Larsen Syndrome, there's the LarsenSyndromeResourceCenter.com, which we helped create. On a broader level, I think it's a very good idea to try to connect with other parents of disabled children. I think you'll find that you're just more comfortable and able to relate, even if your children's disability is different, there's just...I found that I'm able to connect more with other parents of children with disabilities. And also, just be very vocal with your healthcare providers in terms of getting the information you need, to get as many possible services for your child. One specific tip I would recommend, just to help things go quicker, is write those darn letters of medical necessity yourself, because nobody knows your child better than you do - EMILY: For the equipment and the services. ELLEN: For the equipment and the services, and hand it to the doctor and say, "Here, you can read it, edit it if you wish, but then just have it retyped on your letterhead." And most of the doctors have just said to me, "Thank you, thank you," because that just takes something off their plate. That's something specific - EMILY: Is that even legal? ELLEN: I don't know. EMILY: You can't give legal advice. ELLEN: No, no legal advice, but the doctors can read it and edit it, and then I can sign the letter if they don't agree with it, but it was helpful for them. Yeah, so connect with other parents. Nowadays, it's so easy to connect with other parents that have children with the same disability or similar disabilities through Facebook or other social media platforms, and I think that's really essential. Or other parents in your communities through SEPTAs, which I think is Special Education PTA organization - EMILY: Parent Teacher Association. ELLEN: Parent Teacher Association. So there's just so many more opportunities than my parents had so...not that it's always going to be an easy ride, but there are resources out there if you look for them. EMILY: I would say the most important thing that you could do is make sure that, if you don't have a disability, and even if you do, that your child has other disabled people in their lives, whether that's in the form of media, of the books that you read together, of actual people, whatever the case may be. I think that recognizing from a young age that I was not the only disabled person in this world was invaluable to me, and not denying that experience to your child is one of the best things you could do to help their self-development and to help strengthen their identity. ELLEN: Yeah. SPEAKER 1: Parenting Without Pity is a storytelling resource of podcasts, videos, and blogs that honors the experience and knowledge of disabled parents. You can find more from our Parenting Without Pity project at RootedinRights.org/Parents. [End of transcript]