[Transcript of, "Parenting Without Pity: Jessica", 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 Jessica from Phoenix, Arizona.

JESSICA:  My name is Jessica Roberts. I'm a T6 to T8 paraplegic. I am a wheelchair user and I live in Phoenix, Arizona. I am married, I've been married almost three years, and I have an almost two year old son named TJ. I am paralyzed from the waist down, I was in a car accident on Christmas Eve of 1999. I'm originally from Westchester County, New York, and that's where I sustained my injury, and I've been in Arizona for 15 years, almost.

CLARK: What was your experience like, growing up with your family? You know, brothers or sisters?

JESSICA: I have a brother, he's almost 35, and I grew up in a big Italian family. My dad's Italian, and loud New York Italians. We always got together. Christmas Eve was really big in our family, and we just like to spend a lot of time, I'm very lucky that I have such a strong, close-knit family. My dad grew up as an only child, but my mom has two sisters, so I have four cousins that I'm pretty close to, and that's really nice, and even with the age gaps, like my cousin's almost 46 and the youngest cousin is 22, so even with those big age gaps we were still able to just be close to each other and be a close-knit family.

CLARK: Talk a little bit about how your family reacted and what their outlook was, and how that informed like you responding.

JESSICA: Okay. So, when I got hurt, my parents were very upset, of course. It was a big shock, because it was a car accident, and I was driving with my friend and we hit a tree on his side. He's okay. He's doing well now. I mean, he's done well before too. He didn't sustain any injuries. But my parents pretty much just ... it was like a new norm. So they had to figure out how to adapt the house, and then just figure out this disability. So they had the six weeks before I came home in order to just kind of get used to this new norm. My father has the mentality of, just let me do things, be independent, where my mom doesn't. My mom is the person that just kind of likes to help me out and do everything pretty much ... not everything for me, but a lot of stuff. She kind of has that more maybe mothering role? I'm not sure. But yeah, it was just different with the two opposite, polar opposite sides. But pretty much when I graduated from high school, right away I lived in the dorms. When I went to college I lived about 10 minutes away, so I was able to have that independence. And my parents helped me with that independence. My mom, she was the principal of the school at the time. Yeah, she was a principal. And she would come and she would help me once in a while, and come every week. But I was able to have that independence and I was really thankful my parents fostered that for me.

CLARK: So 18 is a really formative transitional period in anyone's life.

JESSICA: Yes.

CLARK: So how do you think acquiring a disability at that age shaped your identity and your sense of self?

JESSICA: It was hard. It was really hard because I was so young. And I was really young, but it made me more mature, I guess. It made me more of a mature person. I had to grow up pretty quickly. So I was growing up pretty quickly, and it was really hard when a lot of my friends were going off to college, and they were going off to school in just other places all over the country. Like my friend went to school up in Rhode Island. Two of my friends, I had a friend go to school upstate, in upstate New York. That was really, really hard then, because I wanted to go away and I wanted to have that, and I was able to still go away 10 minutes, but I felt like...bad. I felt like, "Everybody's doing things and moving along, and here I am still behind." That really kind of affected my identity, because I wasn't able to do that with my peers. And you know, it is, like I said before, it is that new normal, and even going out with friends, people would go out, people would go to parties, and I grew up in New York where houses aren't accessible. And My friends tried to help me and invite me out, but that was hard too, just because I felt like my senior year was just changed because of that. And I had thought about that yesterday, how a lot of my friends were going off to college. They were going to parties for graduation. The biggest thing when I was in high school was going to Wildwood, New Jersey, and there was another one that people went to. I think my brother went to it. I can't think of what it's called, but they would go out to Jersey. And I wasn't able to do that. Then I remember my senior year after prom, my friends all had a sleepover, a huge sleepover at another friend's house, and they went to Six Flags, and I wasn't able to do that. So I kind of did feel left behind, and that's hard when you're a teenager, I think, because you want to still be able to fit in with your peers., even for me, I wanted to, but having this injury made it slightly harder to do that.

CLARK: Absolutely. What kind of a shift did you make to not feel so left behind?

JESSICA: Now I've become more ... I think my mindset has changed because I was able to be accepted and have people go out with me. If they didn't go out with me and they didn't ask me, "Hey, let's go hang out," I would just find other things to do. For me, I've kind of learned just to kind of be more of a person that ... I used to be very, very social and then I've just kind of learned, hey, you know, I'm okay at home watching TV. So if somebody doesn't want to go out with me, I'm just going to stay home, pretty much. I really like that, especially now as I've gotten older, I've just become more of a person that is more of a homebody, I'm comfortable at home, so. But it took a long time. It took a really, really long time to get into that mindset.

CLARK: Do you have a connection with a disability community in your life?

JESSICA: I don't. When I first got hurt, I tried to be on a website. I tried to go on the AOL chats, and tried to be in the spinal cord injury groups. I tried over the years, and I just can't really get into them. I think they're a really great resource for people, but for me, it's just not my cup of tea. I do have friends with disabilities and that's helped, but two of my good friends have cerebral palsy, so it's very different. Back when I got hurt I wish I had that, I wish I had that resource of that community because I feel like it's really, really important to be able to have people go through the same things that you're going through. I was part of a community of moms in wheelchairs, and that really helped as well. That was one resource I was really thankful that I was in, because you had different people with different disabilities, but they had a lot of the same things that were going on, and I got a lot of resources, like different things that would work for me like baby carriers, different equipment. I was able to help people as well and I felt that was just really, really important to me, just because they do have a lot of people with disabilities having children, but a lot of them just aren't in these communities and people are like, "Well, I need this," and, "What works for you?" That really, really helped. And I had wished that I had gotten into it and started being in the group when I was pregnant. Sorry about the background noise. My son has decided to knock everything out. He's a toddler.

CLARK: He's definitely having fun. So how did you get connected with this moms with disabilities group?

JESSICA: I went on Facebook and just looked up 'wheelchair moms'. Wheelchair Mommy Mommy came up, or Wheelchair Mommy Mommies, and that's founded by Priscilla Hedlin, who is a paraplegic as well. She's got three boys and she lives in Texas. So there's that group, and then there was Wheel Mommies. But Wheel Mommies is just for women with disabilities. It's not people that are moms, or moms-to-be, or people who want to become parents eventually. It's just people in wheelchairs together. And that really helps as well because in that group they had the moms in there, but they also had ... we were able to help other people who were just disabled with, you know, things with spinal cord injury, pretty much, especially newly injured.

CLARK: Awesome. So as someone who's not disabled themselves but has a disabled child, what advice would you have for them? So you know, one, like why should they find disability community if you think that they should, and how would you recommend they go about doing that?

JESSICA: So with the disability community, I think it's really important. Two of my good friends have CP, and they're my age, they're 37, and it's just nice to have that community because sometimes you're in a school and you're a child, and you're the only kid that's disabled. So it's nice to have that online community now and using those resources because you're able to find other kids that might have the things going on, or it's a great way to talk to other children that maybe are the only disabled kid in the school, or find people in your community. And I think it's so important for kids because you want to foster that identity, and you want that identity, and you want to be able to build that self-esteem, and I think that can really help with peer mentoring, and just being in a community to foster that self-esteem when a child has a disability. I think independence is so important. I think finding a way to build good self-worth and good self-esteem, I think that's really important. And then also to...assertiveness. I think assertiveness is so important to be able to teach your child what they need and what they want, especially with the health care system and maybe doctors that might not be aware of that certain disability. They might not be educated on it. So just having that advocacy.

CLARK: Have you found a way that growing up with your disability and what you've gained from that, how that maybe informs your parenting in a way?

JESSICA: Yes. I guess I'll start it off this way. When I was a kid, my aunt and uncle lived in New York. They lived in Westchester County, and they lived next to a home called St Jude's. And it was for children with intellectual disabilities and, I believe, autism. And my friend Nina and I used to go there. Nina lived across the street from my aunt and uncle. So I would go visit and we would walk down there and sit with the kids. So I think having that and being disabled myself has created more of a drive to teach my son acceptance for people with disabilities. I think more now, I think I would have done that if I were still walking, but I don't think I would have done it and really had those books and made it a point to get books and to show my son TV shows with people with disabilities. Just being disabled myself, you know, a lot of kids, just...they're curious and they ask, and I want my son to be able to ask questions. I want my son to be like, "Oh, okay. That person's in a wheelchair. Okay." When my friend Karen and I had gone out probably a few months ago, he looked at her up and down and he saw the wheelchair. And I said to Karen, "Oh, he just knows." He's like, "Oh look, she's in a wheelchair too, just like my mom." So just yeah, definitely that acceptance. I mean, I see so many kids when I'm out, and they just stare. My son goes to swim class. There's a kid who just stands there and she stares. And I, "Hey how are you doing?" "Good." Just kind of teaching your kids hey, that's a disability, and having your kid come over and ask questions, I don't mind. I used to teach, and our kids would come up to us and ask questions, "What happened? Will you ever walk again?" And I wanted them to ask those questions because it was important and I made sure to have them ask questions. I mean, I know some people with disabilities, they don't feel comfortable with that, I've read online. But for me, come up to me, talk to me. Even for people whose children have disabilities, I've read online through a lot of articles, a lot of people would rather that people come up and ask them questions, just to create that acceptance.

CLARK: And I think a key thing with kids is they're asking questions without judgment.

JESSICA: Yes.

CLARK: That's a huge difference, is when they get older and they're conditioned that disability's bad, or scary, or whatever. That comes across in the questions they ask, they're a little bit different.

JESSICA: Yes. Absolutely. Yeah, absolutely. And it is without judgment. I think that maybe when they get a little older there is maybe some judgment there, but I don't know if it's judgment or just not knowing. You know, not understanding and not knowing. When I was teaching I was pregnant with my son. A lot of middle schoolers would be like, "What do you mean you're pregnant? How are you going to care for your kid?" And I'm like, "Well, I'll explain that to you," and I would explain it to them. Or I would be like, "Well, you can look it up online. Here are some resources if you want to." So I mean, there was still kind of judgment there, but I think it was just them not knowing. And then now, being around somebody with a disability who was pregnant and having some disabled peers in the school to kind of understand that. I think the ones that really did understand that more were kids whose siblings had disabilities. They were, honestly, the most accepting. I had a student whose sister was disabled, and she said, "I understand." I said, "What do you mean?" She goes, "My sister's disabled." I was like, "Oh, okay." And she gave me a necklace for my birthday one year. I still have it. I wear it on special occasions. But I thought that was really nice. She understood. And I think children who have disabilities and parents of children who have disabilities are more understanding.

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.

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