[Transcript of, "Parenting Without Pity: Janelle and Joy", 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 interviews Janelle from Leavenworth, Washington, and her sister Joy from Orange County, California. JANELLE: I'll start because I'm the oldest twin by four minutes. My name's Janelle and I was diagnosed with retinitis pigmentosa as a five-year-old, which causes you to lose your peripheral vision. So, I lost a significant amount of vision at a young age, and it's really been a journey through childhood and adolescence and young adulthood, and now as a mother myself, learning how to navigate basically an ableist society as a person with a disability. And so I've learned a lot, now I have two kids. I have a daughter who's nine, and a son who's five. And I do things differently than other parents do, and I think that's okay, and I think my kids see that, and I think it's been a really good experience for my kids to see a capable mom who does things different than other moms do things, and still shows them...still teaches them a lot. JOY: So, I'm Joy and I, same thing, was diagnosed with retinitis pigmentosa or RP when I was five, and have two daughters, ages eight and 12, and same as Janelle said, I really feel like they get to see me do things a little bit differently, and our family does things a little bit differently, even with transportation, help with homework, things like that are a little bit different in our family. But I like being able to open that up to conversation, like when somebody says something to me in public or asks me about either my guide dog or my cane, being able to have my girls ask questions later, discuss what happened and why people have certain perceptions has been...it's been helpful. And while we grew up in a loving home, our parents are nondisabled and our other two siblings do not have disabilities, and so we grew up in a home where we were treated just "normal," but also our disability wasn't really recognized or talked about, and so that was really a struggle for a long time, and I think our parents were doing the best that they could. They didn't have resources like Google or the internet at that time, and so there was just a lot that they didn't know, and they didn't know how much we were struggling with trying to navigate a world that really wasn't designed for us. CLARK: Yeah, great, if you could say more even about what your childhood was like, just growing up, where did you grow up and what activities did you like to do? JANELLE: So we grew up in Illinois, in a town called Naperville, and it was very Midwest. JOY: A suburb of Chicago. JANELLE: Suburb of Chicago, we did a lot of - JOY: Different school activities, with plays, and I did cross country and track and all the student government and that kind of thing, right? I feel like we were both really social, we had a lot of friends, we enjoyed...I think we had a good happy childhood for the most part. There was always this thing of like, we know we're different, and as children our disability wasn't as...it was more of an invisible disability because we looked, a lot of times still now, we look like we can see even though we can't. And so, I think there's a lot of misconceptions, and that I think was the most challenging part, is that it was something that we never talked about in our family, and not even to each other. It was just like...almost pretended that it didn't exist, even though it was this huge part of our life. JANELLE: Yeah, and so we grew up kind of...well both compensating for certain things. In some ways we didn't have a lot of special services and school, and maybe just kind of learned the ways that. "Oh, I'm going to..." Like if I couldn't see the board or something like that, I would get notes from friends later, or I would just kind of be like, "oh, I guess I'll just miss those notes." I wouldn't think to ask for anything special, and I think my parents, even though we kind of had I IEPs and everything, didn't really know exactly what we needed either, and so we kind of developed those ways to compensate, but then also I developed kind of a lot of excuses for things. I would pretend that I was just klutzy when I would run into things, or we'd let people believe we were just kind of air headed even though we're both very intelligent, just because what they would see on the outside looked like it was just ditziness, and really it was that we couldn't see. JOY: Not waving to them, not recognizing people, not knowing people's name when they walked by. JANELLE: Running into a garbage can in the lunch room or something, all those things were just daily obstacles or daily challenges. CLARK: That's something you've never really talked about growing up even, to each other, like you said. What changed? What was that switch like for you? JANELLE: Well, I think, I mean...I don't know, you can take this one. JOY: Well some of it I feel like was....Janelle was deciding, she said, “Well, how about we start a blog, how about we start writing about stuff with our vision?” "Okay...?" JANELLE: Because we hadn't talked about it for so long, that it felt weird to talk about it even with our own parents. Like it was just kind of an awkward subject, where sometimes family members would be like, “So how are your eyes?” And it was always a very sad subject where we were being pitied, and people were feeling sorry for us, and we knew we didn't want it to be like that, but we weren't sure how to change it, because that's how it was for so long. And so both of us really find...we both express ourselves through writing a lot, and we both have been good writers for a long time and enjoy writing, and so we decided to start a blog in...what year was that? JOY: I think 2010. JANELLE: Yeah. JOY: 2011. JANELLE: So about nine years ago we started. JOY: By that point I had a four-year-old and a baby, and Janelle had a little one, and it was kind of like...also I had started to kind of field questions from my daughter about like, “Well, does aunt Janelle have bad eyes too?” Just asking me questions, and I'm like, gosh, what do I want her...I started to notice that she would see me run into things, or not say hi to people, 'cause I was still, at that point, stumbling around, not really...I kind of had gotten cane training, I had done some things differently. I was teaching at the time and so I did certain things differently in my classroom, and my students did know that I didn't have much vision, but it still kind of remained this thing that we didn't talk about a lot and wasn't fully there. But we noticed that once we started writing and posting these things about our experiences, people were super curious and super...well they just wanted to know and learn and they felt invited in to the - JANELLE: Yeah, I remember my one aunt saying, “Just keep writing, keep writing.” Like all our aunts and uncles who had always been so loving and kind to us, though they really just wanted to know and they didn't know, and our own parents didn't know, our own siblings didn't know. So I think it was really educational for them, and really that was kind of the purpose, was just for our family and friends, but then our blog reached other people too, that have retinitis pigmentosa or have other vision loss, blindness, and so it ended up becoming a way for us to connect with other people within our disability community, and it's been a really great way to connect and find others who share our experiences. JOY: I felt like in part it added to my...it was part of my decision to get a guide dog and to just daily be out more with vision loss. Not that...I mean it's interesting too though, because we can still process things and write about how it's still sometimes a struggle. It's not like something just switched and now we're like, “Oh, we're totally fine." JANELLE: There're still things that come up, like even this morning we went to my parents' church, and I went up for communion and had no idea where the glasses or anything were and I found myself just standing there feeling like, "Oh my god, what do I do?" I'm looking around and having that kind of old embarrassed feeling, like, "Here I am." [laughs] JOY: But we're able to process it different than we once were, and we still...I mean, you know in job interviews you're always just wondering, "Is my disability going to make me not get this job?" And that's a real thing and people don't think it's a real thing. They think, "Oh, ADA was passed and everything's great now." JANELLE: "They're not allowed to do that." Well, they can find other...[laughs] JOY: Yeah. JANELLE: Other reasons, other ways to discriminate. But yeah, it's been interesting. CLARK: Absolutely, so, how would you say, comparing both kind of how you functioned and the way you thought about yourself and in some situations now, how you were in high school? How do you compare those two versions of yourself? JOY: I feel like I'm a lot more confident and I'm just me, I mean, so I'm getting my Masters right now at the University of Washington, and I come to class with my cane and my electronic magnifying devices, and I think before, I would have tried to hide all that stuff and sort of blend in. And now I know I stand and it's not always easy, and I feel like it is easier because people know that I need assistance sometimes, and they also see that I'm really capable, and I feel more confident, and I feel like I am more capable because I have the assistive technology that I need, and I have the resources that I need, and I can advocate for myself. So, for example now, presentation style came up last year, where we were supposed to design presentations without words. It was just supposed to be a presentation that spoke for itself with 20 slides, and that's how we were supposed to learn what our classmates did all quarter. And so I think in the past, in high school, I would have been like, "Well that kind of sucks, I'm not really going to understand anyone's presentations," but now I was able to go to my class professor and say, “This is not an inclusive learning environment for me, can we change this scope of the presentation so that it's inclusive for me and my learning environment?” And he was like, “Absolutely.” So, I think just being able to advocate for myself and speak up...I just never did that before, and that's a huge difference, and it feels really empowering. JANELLE: Yeah, and I have a similar story that I remember, in high school I really, really wanted to be a writing-center tutor. I've always loved writing, I have always loved teaching, working with kids. So I was in advanced English and so any student in advanced English got an opportunity to go apply. So I went and applied, and I came in, and you had to pretend, the person interviewing you had to pretend that they were the student, and you were walking them through their paper. Well, their paper, even though it was somewhat of a large font, it was still one that I couldn't read, but I was trying to just look really closely at it, but still just peruse it, and just wing it, but not actually being able to really read all the words and read it fast enough to a point where I could have helped them, and I didn't get the position obviously. I didn't get to be a tutor, so I was really disappointed about it, but I also felt like, "Oh, this is because of my vision," and I didn't think to ask the teacher or anything. And then even early, I did become a teacher, but I still I didn't really ask for accommodations or anything, I kept thinking, "Well if I ask for accommodations, then they're going to find some kind of reason to get rid of me, or they're going to be worried that I'm unsafe with the kids. Or they're..." I just had so many concerns about it. "They're going to think that I'm less than or that I'm not capable of running a classroom." But now in my job it has...in my interview it was interesting 'cause it was a Zoom interview, so I don't know if the really realized, even though I had mentioned it in my cover letter, that I have low vision. But then when it came up and we had our big in-person meeting after I was hired, and I had to write and say I was coming with my guide dog, and there was some allergies and a couple issues that I kind of had to navigate around, and then once I started my position there was some things with paperwork that I was having trouble doing, and having trouble finding the typos, extra little periods, or when things were bolded and unbolded. And I was able to go to my director and ask for accommodations and not feel bad about it. I felt very empowered. And one of the funny things is that I'm writing 504 plans for students, so I'm writing accommodations for them and I'm thinking in my mind, "If I can't ask for an accommodation myself while I'm writing accommodations for students, then something's really wrong, you know?" So, and my director, of course, was more than willing to, she's given me lots of accommodations, and I am able to finally see them as accommodations to do my job. Not like, "Oh, I'm getting these special privileges or this special treatment or something," because it's just making it equitable, it's not like it's making me have an easier time. I'm just now having the same amount of work and the same as everybody else, but I get a little bit more assistance, so... CLARK: Yeah, absolutely. While you were saying all that, and you talked about worrying that asking for accommodations would make people think you're less competent, and then that thing you said about being in high school and tripping over a garbage and just playing it off as being ditzy instead...[laughs] hiding it didn't seem to make it any better either, so yeah. That real kind of irony, where we think saying what we actually need will make us seem less competent than we are, but really hiding it makes us less competent [laughs] than we could be. JANELLE: Yeah. JOY: Because then if we don't tell our story then people feel the right to make up their own story about it. And so that's what would happen, time and time again. I remember even walking into just a restaurant to use the bathroom when I was first married, and my husband stayed in the car, and I walked in and I tripped over a low stool. And the manager or someone who was working there was like, “Have you been drinking?” They literally thought that I was intoxicated. CLARK: Right. JOY: So of course if I had showed up with my cane or something where they knew, "Oh, she just can't see." You know? So... CLARK: So you said that the blog really brought you into the disability community. Did you have...you also said you had some cane training, what was your interaction like with blind organizations and other folks with disabilities before? JOY: So I did, I got a scholarship when I was getting my master’s degree from the National Federation of the Blind, and so that was my first real interaction with any blindness organization, and that actually has followed me a long way. Even though I still struggled, I had these people that I knew I really respected and admired. I met...they paired us up with mentors during the conference when they were giving out the scholarships then. JANELLE: 'Cause this was a long time ago, I think this was when you were like 24. JOY: I was like 24, yeah, so that was 15 years ago. Yeah. So there was this one mentor, and he was an attorney, he had the same eye condition as me, and he was 30 years older than me, and I just really was like, “Wow, look at everything he's accomplished.” I became friends with his wife too, and we're still friends to this day. But I remember seeing him out there, and like, "Well he doesn't look like he's incompetent, and none of these other people that I'm meeting who are walking around with canes, they look actually very respectable, and they look very on top of things, and very like how I would want to be perceived." And so, I think just that kind of normalizing it, being in this community where all these people were using these white canes and everything, again, still people that I keep in touch with even today and have...I've been able to call for advice over the years too. Main experience with it, not that I'm super involved now, but it did help me. JANELLE: And I wasn't as involved back then, but I have joined The National Federation of the Blind in Washington state in the last several years, and I am on the board of one of their committees, and so that's an organization that has been really great for me. And then I also connect through...there's a woman named Becky Andrews out of Utah, and she started Resilient Solutions, and it's basically like therapeutic retreats for women with vision loss, and so I have been a part of her retreats as a participant and now as a facilitator. And that has connected me with so many amazing blind women that have become really close friends, and I think having close friends that share the same disability or similar disability has made a world of difference for me, and I think that's really important for anyone with a disability, to connect with other people who share their experience. It just really helps with the feelings of isolation, and just sharing that kind of social identity is really powerful. JOY: Yeah, I remember craving that as a kid, literally being like, "I just wish I could meet an adult with the same thing that I have," because then I would know that I'm okay, or a peer. JANELLE: Or it won't seem so scary, the future won't seem so scary. JOY: Yeah. JANELLE: If I can see someone who is an adult who is living a life that I might want to live, who has kids or who has a career or those kinds of things. JOY: Just living like a "normal life" would, you know, make us feel better. And again, this is before the age of the internet and everything, so I don't think our parents really knew how to connect us in with that world. I think one time they stumbled upon...there was a counselor with low vision and we went and saw him, it was like one meeting as a family, and it opened up a lot of family discussion at the time, but it was like, one car-ride home we talked about it, and then it was like, "Oh, close that book again. Not going to open that one up," and it kind of didn't come up a lot after that. But it was like...I was like "I want to go to blind camp or something and meet just other kids or..." JANELLE: Oh yeah and then now that's another thing that I've gotten involved with. Last summer I volunteered for a week at a camp in Olympia, Washington, for kids who are blind, through another blind friend that I met on the internet who runs Camp Abilities. And that was a really great experience, to interact and be a camp counselor for kids with vision loss, and as an adult it's just really neat. JOY: And that's how we met Becky Andrews actually, is through our blog, and she's, again, the one who does the retreats and...yeah I have this whole chat group thing on my phone through that WhatsApp thing that we talk...it's like when any embarrassing vision related incident happens now, people are leaving those on our chat, and we're also offering empathy, offering advice, offering just like, "Oh my gosh, I've been there too,” kind of thing, which is incredibly helpful. And then something that before maybe made you want to go home and cry and crawl into bed for an hour, you know, now it's just something that you connect with other people about, and kind of laugh and say, "Yep, I've been there." CLARK: Yeah, it changes everything so it's not just...it switches from you being the one individual experiencing something with like, "Hey here's this," that's something I know so many people go through. JANELLE: Yes. CLARK: It's a thing we all encounter as opposed to like, "Oh, here's where I failed again." You know? JOY: Yeah, totally. JANELLE: Exactly. CLARK: Yeah. So what advice would you have for parents of disabled children about finding community, both kind of like how to do it, and while your blog has been great, it sounds like it's important for you to go offline as well. And you know, not just staring down at a computer screen all the time. JOY: I would tell them to get their child connected with both peers with disabilities, and then adults too, living...I don't want to say 'normal lives,' what's a better word...living, yeah, living the lives they want to live. JANELLE: Living the lives they want to live. JOY: So maybe meeting an adult that is doing all the things they want to do, and not letting their disability hold them back from living the life that they choose. And I would tell them too, as far as 'not-tos,' not to spend too much time asking their...I mean, I know of course our example is going to be vision related, like, "Well, can you see that? How much can you see?" Or, you know, "how much can you do?" Or, "How much can you...?" Because then you're placing, on their disability, you're placing so much importance on it that they're thinking, "Oh, they really want me to be able to do this thing. There must be something wrong with the fact that I can't do," I think sometimes questioning a child too much about what they can and can't do can be sending certain messages. JANELLE: Yeah, treat their disability as one of the many traits that makes up who they are, so they might identify as a female who's 12 years old, who likes to do gymnastics, and who also has vision loss. So it's one of their identities, it doesn't have to be what defines them. And it isn't what defines them, so I think it's important for parents to recognize that, and to bring that out in their kids, and to connect them with other people with their disabilities, and to let them talk about it when the want to, let them not talk about it when they don't want to, and really, I would let your child take the lead in that area. Depending on their age and where they are developmentally, but really try to let them take the lead in where they are in their journey. So they might be at a point, at some point where they are embarrassed about their disability and they are really having a hard time with that, and that might be something they need to experience. They might need to be there, they might need to stay there, and you might not want that for them, you might want them to feel so great with it, and super confident and that's just not where they are right now, and that needs to be okay, and they need to have space to be there. And the more space you create for them to be in that place, I think the quicker they will journey on to another place that is healthier. CLARK: Yeah it can be real dangerous when you frame those things as being like this disagreement where if you're feeling embarrassed about something your parents tell you not to be, then it becomes this, "Well then I guess I...my parents are wrong, so I'm double embarrassed about it." JANELLE: Yeah you feel, like, shameful for your shame, yeah, it's like double shame. Yeah. CLARK: Yeah. Now are either of your children disabled at all? JANELLE: No. CLARK: Okay, cool. What's that experience been like for you? JANELLE: It's funny you ask. I was just thinking about that this morning because we were, like my sister said, we had visited my parents' church since we have a lot of family in town, and I just saw the way...I find myself having flashbacks to my own childhood because I see the ease with which my children move about the world, and how new circumstances, different settings, different environments, just come so easy for them. And it really, it makes me feel proud of getting through that, I think, as a child, or as all I that was able to navigate without having assistance, and I think it's really...just for me, brings up a lot of like, "Wow, they have a lot of privilege." And I like to point that out to them, not in a "You should be lucky," kind of way, but in a like, "You have a lot going for you. You have bodies that move quickly, and not everyone has that." And so I think it's just been interesting to kind of compare that. Have you experienced that at all? JOY: Yeah, it is interesting, again, 'cause I will picture the way...now that my daughter's 12 and navigating social circles and all the different things with school, and it's, again, bringing me back, just like Janelle said, to flashbacks of, "Oh gosh, that was a lot more difficult for me, this is easier." And not that life is a piece of cake for anyone, everybody has their challenges. JANELLE: Right. JOY: I know their challenges are just...they're different than what mine were. They're not physical, they don't have to do with their senses, but they do still have them. But in some ways, I do find myself looking at them like, "Wow, they have it pretty good," [laughs] You know? CLARK: It wasn't all in your head, yeah. JOY: Yeah. And I think that they recognize, 'cause I bring my kids to The National Federation of the Blind meetings, and I have blind friends over, and they're out in public and they see people treat us with help, and then they also see people be weird or stare, and you know those things are not lost on them, they pick up on that. And I...my daughter's only nine and she already has a really strong sense of social justice, because I think she observes that in my life. And I was just giving her an example the other week of someone who, kind of a longer story, but someone who was discriminatory against someone who's blind and she was like, "But why? Why did they treat them like that?" And I said, "They just they didn't think they were capable." And she was like, "But it's not true mom, it's not true, they are capable." And so she gets really adamant about it, and I love that because it's my hope that she will be the one at the playground to educate her peers and let them know, like, no, these kids, she's already come home and given me examples of things that have happened where she has stood up and said, you know, "This isn't right," or, "This kid is...lets include this person in our game, even though they might look different or act different than us," and so I think she's very aware of those differences and how they play out in society. JANELLE: Although I have had to teach my kids certain things, where I'm like, "Okay, I want to teach them young," like when my eight year old will grab me and start to pull me somewhere, like, steer me around, I have to stop and say, "You know honey, no, you don't grab Mommy, you don't steer me. That's not how we...I would never want you to think that that's being helpful to someone who can't see. There's something called sighted-guide, and I can take your elbow or your arm or..." You know, I'm teaching her how to interact, and I think they're gaining that benefit. And how to...I mean sometimes it's funny because you think "Oh, your kid's growing up with a parent with a disability, they're going to be so much more sensitive," and in some areas they are, but there's other times, like we'll be watching a movie at home, and my husband will kindly put on the visual descriptions for me so that I can listen to what's going, and they'll be like, "Oh, that's annoying, can we turn those off?" And it's like, "Excuse me, thanks guys." [laughs] You know, so they're not always... JOY: Yeah, it's not all, you know, peaches and cream, they definitely have a learning curve like all kids do. I think they have more of a front-row seat to what's happening. JANELLE: Yeah. CLARK: Yeah, I think kids are definitely a great testament to, like, the power of exposure. Just two last questions here, what might be some of your overall advice for parents of a disabled child? And one question we've kind of come up with over these conversations has been the idea of, how do you balance, you know, wanting someone to have the most accessible life you can provide your kid, versus wanting to make sure they can, like, encounter inaccessibility so they can learn how to find ways around things. How do you balance, you know, wanting to have the easiest life for your kid with wanting to make sure they're not too pampered? JANELLE: I think one of them is teaching your child to find their voice and express what they need, because if they can't do that, if they can't say what they need and say what they don't need sometimes, because they might have assistance from people, unwanted assistance or in areas that they don't need or don't want. Then they really can't navigate, if you're constantly doing everything for them and speaking up. I would include them in the IEP meetings, include them in the 504 meeting, include them in the decisions. I remember being so angered as a child that my parents would have all these meetings, and I have this very distinct memory of this stack of paperwork from some IEP meeting being on the counter, and I maybe was in fourth grade or something, and I remember taking it and throwing it in the garbage and thinking, "ha! They won't be able to see my paperwork anymore." Like I just was, I felt so insulted about not being a part of my own educational decisions. I don't think I knew why I was upset at the time, but I just knew that I didn't want them having these meetings about me and I threw them in the trash. JOY: Yeah. JANELLE: So it's like, include them in the decisions so that you can teach them how to speak for themselves and advocate for themselves. JOY: Yeah, I mean the phrase, the 'nothing about us without us,' I think really works for the disability community as well. Your child should be at the center of those decisions, and I don't think...teaching your child to advocate for themselves is not going to result in them becoming pampered. It's going to result in them finding their voice, as my sister said, and feeling empowered, and just a lifetime of being able to advocate and say what they need, and not have someone else that has to speak for them. I mean, it could depend too on the disability, your disability could be that you don't have a voice, but then there's other ways to find...you know, so there's other ways to communicate, and so instead of saying, "Okay, well then you'll use this computer to talk for you," communicate with your child about, "Well how do you want to communicate with the world?" And maybe your child will have an idea that you haven't even thought of, that "experts" haven't even thought of. I think that, like we explained in the beginning of this interview, we found so many ways to compensate without having any sort of specialist for years. And that's not to say that cane training and assistive technology isn't important, it is, it's amazing and I'm so glad we have it now, and I think that we came up with some pretty good workarounds ourselves, just with our own innate abilities. JANELLE: And I think one of the things our parents did really well when we were growing up, was they did not baby us or tell us things that we couldn't do, even for driver's education, I mean legally blind, they still let us go through the process ourself. I went through driver's education, I went to the DMV and got some special thing that you'd have to use your mirrors or whatever, even though I have four degrees of peripheral vision out of 180, like, under no circumstance should I really be on the road, but I had to, kind of, go through that process and realize that and go through that grief myself of "No, this is isn't happening for you." But they never told me, "No, you're not going to be able to drive. You can't do this." They like, let me go through the whole thing and figure it out for myself, so that it was never them saying, "Hey, you can't drive. It's not safe for you to do that," they let me figure that out. JOY: Yeah, they didn't shield us from sports or from anything. JANELLE: Yeah, gym class, all of that. [laughs] JOY: We had to figure out ourselves, when you get hit in the face with the volleyball. And that's not necessarily the best approach. JANELLE: Yeah. [laughs] JOY: But so we got to try a lot of things, we weren't babied at all, we learned to shake it off. JANELLE: Yeah, riding bikes, all that stuff. They didn't have any special rules like, "Oh, we can't ride bikes after dark," or, "We can't ride bikes," you know, whatever. They let us do all those things that other kids were doing. SPEAKER 1: Parenting Without Pity is a storytelling resource of podcasts, videos, and blogs that honors the experience and knowledge of disabled parents. On the next episode, Program Director Anna Zivarts interviews Dominic from Toledo, Ohio. EMILY: I think that you need to find the balance between protecting your child as every parent would, and letting your child still develop their own individuality. SPEAKER 1: You can find more from our Parenting Without Pity project at RootedinRights.org/Parents. [End of transcript]