[Transcript of, "Parenting Without Pity: Sheila", 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 Sheila from Port Orchard, Washington.

SHEILA: My name is Sheila Northrop, and I live in a suburb outside of Seattle, Washington. My husband and I have two children, one with autism, and I have cerebral palsy. I am 40 years old, and I'm here to tell you a little bit about what it's like to be a parent with a disability. I was diagnosed with cerebral palsy at the age of six months old. They knew there was a difficulty with the pregnancy when my mom was pregnant, but they weren't sure what. I grew up in the military, so I got a lot of care, but the care was probably more geared to making me fit in a body that I didn't come in. So one of the things that has been important to me as a parent, especially as a parent with a kid who has autism, is to really learn how to advocate for myself, teach him to advocate for himself, and learn to develop our autonomy instead of sort of trying to fit into a box that we're never going to fit in. My goal has been to, one, teach my kids to advocate for others with disabilities. It's really easy for us to pass by a situation that doesn't affect us because it doesn't affect us, and help my kids, as a parent with a disability, realize that it does affect everybody. I spent a lot of time in therapy, both physical and emotional. I spent a lot of time having my parents make decisions for me that probably we're the best decisions for me. They were the decisions they were comfortable with. But in the long run, they shortchanged me in my ability to make decisions for myself. So, I would like to help other parents understand that one of the most important things you can do for another human being, especially the human beings we're in charge of as parents, is to develop a sense of self. As I grow older, it used to be really important to me as a kid that I was able to do everything myself. After a surgery about three years ago, I used a wheelchair as my primary mode of transportation. And I quickly began to realize the idea of doing everything myself was going to turn into a punishment because I couldn't do everything myself anymore. But that didn't mean that I was helpless. And that didn't mean that I was somehow less of myself, less of an individual. A lot of times I think, as parents, we wrap our kid's identity up into what we want for them instead of what they need for themselves. And I see that a lot. I see that a lot in a lot of the language we use. There's a lot of conversation about how we refer to disability, whether we use person-first language or identity-first language. Whether we use the term special needs or not to use the term special needs. The 'special needs' term didn't exist when I was born. I was disabled. That's what I was. That's how I was referred to. So to listen to parents now who have kids who are disabled, talk about themselves as special need parents or as children with special needs is really hard for me because I don't see our needs as special. I see our needs as being the same as everybody else's. We have basic human needs that we need met. Sometimes it's more complicated to meet those needs. But that doesn't mean that we don't have the right to have those needs met. And I think using the term 'special needs' separates us that much more from everybody else. I don't think...I think there is this idea that special somehow means you deserve something that someone else doesn't have. As a person with a disability, as a disabled person, I'm not asking for something someone else doesn't have. I'm asking for access into a building. I'm asking for a shower that I can roll into because I can't walk into a shower anymore. And that's one of the things that I think I wish my parents knew when I was growing up because we got it...IEPs and those things, when I was growing up ADA didn't exist. I was born in 1980. By the time ADA showed up, I had goaled out or aged out of all the birth-to-three programs. All of those things that they had set up for early interventions, I had met all the goals of the doctors. So I aged out of those programs. That didn't mean that my needs disappeared. My dad, for a long time, was convinced that once I turned 18, my disability would just go away. I would grow out of it. When I didn't and when I went on to have my own family...my first pregnancy wasn't planned, but it was exciting. We weren't sure if I was every going to be able to carry a pregnancy all the way through. The doctors always advised me that people like me shouldn't have kids. So, when I got pregnant for the first time, I was really nervous. It took us a long time to get people to pay attention to me as a parent. I needed help learning how to breastfeed. I needed help learning how to diaper. But when we went to the specialists, they said, "We can't help you because we don't know how to do this." This wasn't in their realm of expertise. So, I had to teach myself. And I learned to diaper one handed and I would pick my son up by his onesie with one hand and if people were in the room, they would freak out, right? They were absolutely convinced that I was going to drop him on his head, that I couldn't do this. They rushed in to try to catch them. And eventually I was just like, "I got this." Right? This is my kid. I'll figure out how to take care of this kid. So, that's one of the things that I think, also, is important. That you give people space to do their own thing. Stop trying to exert your expectations onto somebody else. Even as adults, even as a parent, I had as experience the other day. We were out as a family, the four of us, doing something in the community and I had a woman come up to me and treat me like I was a child in front of my 17-year-old and 13-year-old. And I was mortified. I was angry, I was hurt, I was embarrassed. And yet, at the same time, I didn't want to make a public scene so I didn't say anything. So I came home and then I vented at home. I was like, "It's not your fault you guys. I promise it's not your fault. I just haven't figured out how to address this publicly appropriately." But I said to my boys, "Don't do that to anybody ever." And my son came home the other day from a swim meet and one of the boys was a swimmer, had cerebral palsy. And he was like, "He was stuck in a wheelchair until he got out to swim." I said, "He's not stuck in the chair." And my 17-year-old was like, "Whatever." I said, "No. It matters. He's not stuck in the chair. He uses the chair. How you talk about it matters." So, that's another thing that I wish parents and people in general knew. The words we use matter. How we describe ourselves, how we describe others, impacts how we interact with each other. Let's see, that's sort of really rambling.

ANNA: No, that covered a lot, thanks. This idea of you having insight as...I'm kind of...I'm interested in diving more into your thoughts on parenting a kid with autism and how your disability and the way you think about disability influences the choices you make around interventions you do or don't do, or what you do to try to make the world more accessible for him or what you decide to let him try to struggle through the world as it is because he's going to have to learn how to cope?

SHEILA: I identified it really early. My bachelor's degree was in speech and hearing sciences. I wanted to be a speech therapist forever. And so, the training that I had, when he hit those early stages as a toddler where we look for the nonverbal issues, the lining things up, all the typical markers that we look for in boys with autism, I was like, "Oh, he has quite a few of them, but I am not quite ready to go see if he has this, because I'm worried about the label." Labels, when we talk about education and special education and interventions, aren't always best for the kid. So, we let it go for a really long time. We didn't say anything. He advanced really quickly in school. They skipped him a couple grades. His social skills were marginal. He didn't have a lot of...But he didn't have a lot of destructive behaviors. He didn't have a lot of stimming. So, he didn't make people uncomfortable. He was just really awkward socially. As he got into junior high, he got into a couple fights that were bad. One of which actually sent him before a judge. And I said, "Maybe it's time." I had convinced...the people around me had convinced me not to pursue it. My mother, which says a lot, right, she wasn't exactly my best advocate, had convinced me not to pursue it because of the damage it might do to him. Right? "You don't want him stuck with that label. Blah, blah, blah, blah, blah." My husband felt very awkward about it. He was fine at home on some days, and some days he was really explosive at home. And he spent all day at school and for the most part, other than the fights, he was great at school. So, when we went to the teachers, and we said, "This is what we think the issue might be," everybody dismissed us because it didn't look the way social media or the news or society had made it look. He didn't fit exactly into all the little boxes. Again, here we are back to this idea of 'if you have all this, this makes you this.' So we went to come counseling. We did the diagnosis, and we went to some counseling. And the counselor came back and basically said, "So yeah, he's definitely on the spectrum. But if you want a further diagnosis, take him up to Children's in Seattle." Right? He's 13. So, I handed him the letter, and I said, "This is where we're at. What do you want to do with this?" Because I was left out of a lot of those decisions growing up. The decisions that were about me, I didn't get a say in, and I didn't like that. So, I needed him to have a say. As much as he can understand as a 13-year-old. Because he's still 13. Autism or not, he's a 13-year-old, right? Teenagers are...they're a thing, let me tell you. I have two of them, and oh my goodness. They are definitely a thing. And he said, "Can you and I just work on this? Can we just work on these skills? Show me what I need to do because I know you know what I need to do. And I'm ready to listen." Because we had tried to work on it before, and he just sort of dismissed me. And he's still not thrilled with the idea of being called autistic or being on the spectrum. He doesn't like that. But he's willing to recognize that he handles situations in a way that might cause problems for him or for others around him. And he said, "I need to be safe. I need to be safe for me, and I need to be safe for everybody else." And that was his decision. That wasn't mine. So, we didn't go seek anymore treatment. And we have been working together on how he wants to handle things, what he wants to do. He's learning, because we taught him how to, he's learning to recognize when he's becoming overstimulated, which was his biggest issue. He didn't know how to recognize that that's what was happening. And so, he's been able to come to me and say, "This is what happened. I'm worked up. I don't know how to come down from this." So, we work together on how to rearrange that. For Christmas, my parents bought us all tickets to the production of the Lion King while it was here. And I was a little worried. I was worried about me because it's really crowded. And I was right to be worried because I spent a lot of time...they packed us all in, but they hadn't opened the doors to the theater yet, so I was just surrounded staring at people's butts, thinking if this place catches on fire, I'm screwed. Because there was not going to be a way for me to get out safely. And I was worried about what the lights and the noise and all of that stimulation would do to him. And we didn't get to sit together at all because when my mom purchased the tickets, the tickets for wheelchair seating are in a completely different section than the main body of the theater, which we've run into several times, which is frustrating for me as a mother, right, that I go places with my husband and my son and we don't get to sit together because there's not seating for all of us. There's seating for one person in one wheelchair with one companion. There's not room for us to be out together as a family. Which stinks because we like being out together as a family. But back to the Lion King issue, we got done and he came down to find us so we could leave. And he's like, "Mom, I feel weird." I said, "Okay. How do you feel?" He's like, "My head is pounding. I'm shaking." I was like, "Hmm, so what was the hardest part about this for you?" Because he plays drums in the band, which for him is unusual because he doesn't like loud noises. He's like, "It was really loud and the lights were really bright." I said, "Okay. So here's what I think is going on. I think you got overstimulated. And I think your body is trying to tell you that it got overstimulated. So, let's go home." And the drive home was miserable for everybody because I had been squashed in a seat that I wasn't supposed to be squashed into, just so they could fit us in for the seating. And the drive home was really hard. And he got home and he's like, "I need to throw up. I'm so overstimulated that I need to throw up and I'm scared because I've never felt this way before." I said, "Okay. Go sit in the bathroom. If you need to throw up, throw up." He's like, "Can I throw up with the lights off?" I said, "Yes, but you're cleaning it up if you do." So, he said, "Okay." So he went in there and he turned off the lights and he sat there for a while. And he's like, "I still don't feel good." And I said, "Go into your room and lay down." And it took...in the dark, it took probably 12 hours for him to come down from that experience. And because it was the first time, I think, that he recognized it on his own, it was both terrifying for him and empowering for him. It was terrifying because he finally was recognizing it and experiencing it and noticing that that's what he was experiencing. And he wasn't quite sure what to do with it. But at the same time he knew he could come ask what to do about it. That was one of the problems I had growing up and didn't want my kids, regardless of ability or status, to not be able to do with me. There was a lot of things I couldn't go to my parents with, either because they would choose to ignore it or they needed to fix it. I didn't have the power to fix it myself. And I really want my kids to have the ability to decide how they're going to function in society in their body and in their mind. Because I recognize as a disabled person, society limits us in a lot of ways from making those decisions ourselves. So the decisions that we can make of ourselves, I think we should be making. Again, I rambled. I'm sorry.

ANNA: No, that was great again. That was...Yeah.

CLARK: Absolutely. And you organically touched on a lot of things we're going to ask about directly, so that works great.

SHEILA: Okay, good.

CLARK: So, I'm curious to hear more about how you became involved in the disability community and what that process was like for you.

SHEILA: It is still a process. Let me tell you, Clark. Oh my goodness. I have days where I'm like, "Yes. Total disability pride!" And I have days where like, "Oh shit. I just want to stay in bed because I hurt and this sucks. And everybody sucks and life sucks." I grew up hiding my disability. My parents weren't comfortable with it. I grew up in an upper middle-class white family where a disability was seen as something...I'm not sure if 'shameful' was quite the word, but that's kind of how it felt. And as I got older and had experiences on my own as a parent and as an adult and went back to my parents, they're like, "Oh yeah, we knew that would happen. We just chose not to tell you." And I was like, "Wait a minute. Hang on. You're telling me you knew my bodily function would start to change by the time I was mid-30s, early 40s?" She said, "Yeah, the doctor told us so." I said, "But you chose not to mention this?" She said, "No. We didn't think it was a big deal." I said, "Mom. It was a big deal. I would've made different decisions. I would've done different things with my life had I known what to expect." And then I was struggling finding a career that I could do with the mobility that I had. I really wanted to be a speech therapist for a long time, because many of the interactions that I had with my OT and PT as a kid were great. So, I wanted to kind of help in that. I have totally different feelings about that now, let me tell you. But it became very obvious to me in trying to do the clinical settings, especially working with hearing aids, that wasn't going to be up my alley. Physically I couldn't mess with teeny tiny hearing aids. So, I needed to find something else to do. So I went back to school and got a degree in communication and leadership. And I really liked school a lot. And I was really good at it. I was always really good at it. I knew that was kind of going to be my bread and butter from the very beginning, because back in those days they didn't modify PE classes, you sat there. They didn't modify labs, you sat there. Or they gave you the pity A. Or whatever.

CLARK: Yeah, I got to be scorekeeper in gym a lot.

SHEILA: Yeah, I got to be the TA. Everybody else did the three-mile run I was like, "Yup. You're done, you're done, you're done." They didn't have room for us. And even though there's supposed to be room for us now, we're still fighting for it a lot. And as I continued in my education and as society changed..., like, when I was growing up, I didn't know about these special camps that we could've gone to. I didn't know or have a sense of community. I always felt alone. And then I started working on my PhD in conflict resolution. And for my thesis, I wanted to do...or for my dissertation, I wanted to do something around the disability community because I was finally starting to recognize that A, there was one, B, I was part of it, and C, that was okay, that all of those things were allowed. So, I started doing research. And I started learning all these things. And I started going, "Oh my God. This is my life. Why did I not know this?" I just...in fact for my dissertation, I spent Christmas break reading Disability in Passing, and I started taking screenshots of the book and sending it to my husband. And he would walk out from work and find 43 texts and be like, "Oh my God, she died. What's going on?" And it wasn't that. It was that I was having realizations about me in the world. And where I fit, and that other people were having those experiences. And now, I'm far enough through the door that I can't shut it and I can't walk away from it. So I need to start doing things about it from where I'm at. I'm not necessarily in a place yet where I'm ready to be mega-activist. I'm not sure that that's my personality. I'm glad we have mega-activists. Groups like ADAPT need credit. They've done a lot. But at the same time, once you know something, you're supposed to do something with it. And I literally was just having this conversation with my husband the other day about, "I've learned all this stuff. I've learned all this stuff about how the legal system works, about how accommodations are supposed to work, about how we should treat people and we're not doing it that way. And it's eating me up inside. So, what am I supposed to do with this?" And he goes, "Do the interview." So I said, "Ugh." I was kind of questioning it because, again, I grew up that your disability wasn't something you were supposed to talk about. And I'm not okay with hiding it anymore. I'm also not okay with people walking up to me in the street with my husband and children beside me and going, "So, can you have sex?" Well, I have two children, one that looks exactly like me. So, clearly the answer is yes, but you have no business asking me that question." I love my parents, but as a parent now of a kid whose autistic, I definitely wish they had done things differently. So, I want to encourage parents, whether they have their own disability or not and their children are disabled, to get uncomfortable so that you can get comfortable. So that you can talk to your kid or whoever about what it means to have a disability, about how we talk about disability, about how we think...I mean, my Facebook feed is blowing up with Bryan Cranston this week. And I got into it on a Facebook page with people who...that's a support...not a support group for quadriplegics, but basically they sell products for people with disabilities. And this guy was like, "You guys are whining. If there was a scene where he wasn't quadriplegic, when he could walk, how would a disabled actor do that?" And my response was, "A, you're assuming that all people acquire disabilities." I said, "There are quite a few of us who are born into bodies that are disabled. We didn't acquire them as a seven-year-old. We didn't acquire them from a car accident. We came in them. So you're assuming that my situation is like yours. It's not. There has to be room, even within the disability community, to talk about that the experience of someone who acquires a disability is different than the experience of someone who's born with a disability." And I think we're kind of afraid to have that conversation, because we need the same things in a lot of respects, but we're not treated the same way. I work with a guy who is a paraplegic, who was in a car accident when he was 18. And when he comes into a room, he pulls himself out of a wheelchair, sits in a chair, does everything he can to make it look like he's not in a chair. I go into a room, there's no hiding that I can't get out of the chair. Some days I can barely push the stick to get to the room in the chair because I am in pain, or because I'm tired, or because of whatever. And he's uncomfortable with me. I'm not uncomfortable with him, but he's uncomfortable with me. So, I'm part of it and I can't leave it behind. And I need to do something with it. And I haven't quite figured out what to do with it, but I'm here now so point me in the right direction. My mom was a counselor. When I grew up she was a home ec teacher, and we grew up overseas because my dad was in the military, and she got a phone call that said, "They're getting rid of those classes, get a different job." And at that time, 504s weren't really a thing, IEPs were kind of a thing, but her comment now, I have a niece who has a disability. I have a niece who has arthrogryposis. And so she's been kind of walking my sister-in-law through all of those processes. They're stuck now because my niece is 14 and she doesn't want her mom washing her hair anymore, but nobody can help her figure out how to wash her own hair. They went back up to Children's and saw the arthrogryposis specialist at Children's and the arthrogryposis specialist said, "We don't know how to help her. You're on your own." Thus increases my frustration with the specialists that are supposed to be helping us. They're not really helping us. They're helping us to be what they think we should be, not what we are. But my mom's comment is, "Well, if you look at the world that way, then everybody deserves a 504." And that frustrates me immensely because there are a lot of people who can function just fine in the world as it is. There are a lot of us, for a lot of reasons, who can't. I've been doing research in terms of universal design and strategic negotiation because right now, as disabled patrons, our options are lawsuits and that's it. And if we're not wealthy, we're screwed. And now we have to write a letter that says, "Hey. Oh by the way, I tried to get into your establishment. You have 30 days to acknowledge that I tried to get into your establishment. And then 90 days to maybe do something about it if you don't find a loophole around it." We have a law that's supposed to protect us that has no teeth. So, whether I'm comfortable speaking up or not, I need to, because what we're doing isn't working. And one of the things my mom did teach me growing is if what you're doing now isn't working, you have to do something else. So, I want to be a part of doing something else.

CLARK: What advice do you have for nondisabled parents about how to kind of connect their own kids in the disability and being around disabled adults and disabled children? And if there's value in that and what is that value?

SHEILA: Do it. Do it because I wish I'd had that as a kid. My mom had a friend who was in a car accident as an adult that resulted in her being a quadriplegic and she was a favorite friend to go visit. Because she had limitations that were different than mine. She had a body that functioned different than mine, but she got it more than my mom did. The mom...the aunt that my mom hated had polio. My great-aunt, I guess. And so I loved going to visit my great-aunt because she had leg braces that looked like mine. And those were experiences that were really valuable for me. And I didn't know enough at the time, these women are both dead, had I understood the connection and the sense of community that I was feeling, I would've asked way more questions. I would've said, "Talk to me about your experience. What would you do differently? What should I do differently? How should I approach people differently?" Sometimes it's easiest just to get angry and then shut up. But getting angry and then shutting up doesn't change anything. So, how do I get angry, if it's okay for me to get angry, and then use it positively? I've asked my sister-in-law, I was like, "You need to connect her to some adults." Right now most of that connection is on Facebook and since she's a teenager, I understand why she leery about that. I have teenagers of my own. Social media can be a tricky place, but my sister-in-law grew up under my mother's tutelage. So, their daughter is disabled, but not disabled. I mean, I was looking at family pictures and I was always encouraged by the photographers to hold my body in a certain way during family pictures, so things were less obvious. I was looking at family pictures we took over the holidays, she's been taught the same thing. And we've been gone. My husband was in the military so we've been away from home for the last 12 years. She's been cultured into the same thing. They didn't ask for accommodations for PE classes, they just said, "She doesn't have to take them." And it breaks my heart because I watch her going through the same thing. She's being enculturated into that same culture and yet they're looking at me going, "You need to be the example for her, you need to be the example for her," but she's uncomfortable with me because I'm disabled. She doesn't want to spend that time around me. She gets uncomfortable when we go out and I'm in my wheelchair. She walks further away. She does all the things I did. She does all the things I did because that's how we're cultured. We have to change that culture. As parents, regardless of whether we have disabilities, we have to change that culture for our kids. There's still this gigantic culture of shame and embarrassment around disability. We need to make that go away. We need to make it that this is who we are, this is okay, how we function is okay, that your wrist is bent and you can't get anything into it or out of it is okay. That's fine. There's no shame in it, that's just who you are. It's okay if they don't overcome anything. Our narrative is written into society that we're only valuable in society if we have somehow overcome our disability. If we've made it onto the Paralympic team or we make our money as inspirational speakers. Don't get me started on that. We'll move on. We need to teach our kids that they're okay how they are. And they shouldn't be ashamed of it and they shouldn't be embarrassed of it. And when you see somebody else with a disability, that's part of who are you. That's part of your community. My niece is convinced that she wants to move away from home and I was talking to her mom about it. I said, "That's great. How's she going to live in a dorm?" My parents didn't teach me how to live in a dorm. Nobody taught me how to haul my laundry up and down stairs. Nobody taught me how to carry food on a tray and serve myself. Nobody taught me that people would give me dirty looks if I put the damn tray down to scoop the food onto my tray. She wants to be a veterinarian. Have they prepared her for the fact that if she goes to the veterinary program at WSU, those in the program can say her disability disqualifies her from that program and she needs to find something else? They haven't. All they've told her is that if you want it, you can do it. That's not true because there are systems that are set up that say someone else gets to decide whether we can do something. Not us. Someone else, some other system. So, I would tell parents, "Get your kids into those camps. Get your kids into those communities. If you're uncomfortable with it, suck it up and get comfortable." We do so much from spaces of being uncomfortable that we're making difficult situations worse because we're not willing to embrace being uncomfortable. And having uncomfortable conversations. It's okay to have uncomfortable conversations. It's okay for us not to agree. It's okay for my niece to decide that she doesn't really want to identify as disabled. That's okay. If I want to identify as disabled, that's okay. We have to have conversations we're not having. As parents and as communities, we have to set up environments. As someone who teaches communications, this is really close to my heart, we have to set up environments where we can have conversations that are uncomfortable no matter what, and validate another person's perspective. How many times have we said to someone in our own community, "You're not disabled enough to be here. You don't have my problem, so you're not disabled enough to be here." But they're not able bodied enough to be in the regular community. And we have to acknowledge that we may have our own feelings of being uncomfortable with our disability. I certainly still am. I grew up thinking the last thing in the world you want to be is disabled, so I have days where I'm like, "Do everything so I don't look disabled. How undisabled can I look this morning?" And then there are days where I'm just like, screw it people. This is me in all my disabledness and all my crippledness and all my whatever you want it to be. Here I am, that's not changing. Don't walk in the room and tell me I have the best seat in the chair, or the best chair in the house because I came with my own seat, and then offer to pray over me. Seriously, don't do that to me. We need to have these conversations. As parents, we need to put our kids in touch with and around kids who are like them, kids who are different from them, kids who are adults. They need adults. They need adults who are like them or different than them to see that we're functioning in the world. Even in a world that isn't exactly...doesn't provide ease of function, we're still functioning. And make that be a part of it. With my son, he developed a friendship with a kid that my mom knows. And he is very open, this friend is very open about the fact that he's autistic. He's like, "Dude that's just me. That's how I am. That's how I roll." And they're like two peas in the pod. And so, when I said to my son, "Do you realize that this friend has the same issue that you do? Has the same...he's on the same end of the spectrum." He looks at me and goes, "No. I didn't know that, but damn that makes sense." Yeah, it does. He's like, "Now I understand why we get along so well. Now I understand why he is the person that I'm the most comfortable around. I don't have to try to be something else. With everybody else I have to try to be something else or I have to try extra hard not to say something like this because somebody might think I'm a jerk when really that's just the way it comes out of my mouth." So, yeah, I think we should get our kids around those communities. I was proud of my oldest. My oldest was in a class with a young lady who has cerebral palsy, who uses a wheelchair. And the kids all came in and just dumped their bags on the floor. Didn't care about what proximity they were within her chair. And my kid got up while the teacher was lecturing and moved every single bag away from the chair because he'd gotten a tip off from his coach that they were going to have a fire drill. And her helper was there. And her helper's like, "How did you know to do that?" And he's like, "My mom uses a chair. This shit makes her crazy. People need to leave the floors clear." And the helper was like, in awe that somebody would know what to do. And the girl was like, "Right on dude. Right on. Can you move that bag a little bit more because I can see it getting in the way?" And he moved it for her. And he came home and he was like, "People are assholes mom. How do I not be an asshole?" I was like, "Did you move the bags?" He said, "Yeah." I said, "Then you did the right thing. If you saw a problem that prevented her from being able to move the way she needed to move, you fixed it. You did that. You did that right. You didn't have to ask." I said, "If it comes to moving her, you better ask." Because I've had people do that to me before when I'm in the chair. They just, "Oh, you're in the way." I had some dude...holy crap. You know the little tiny elevators that they're like, "This is the elevator you get to be in"?

CLARK: Right.

SHEILA: It was my oldest son and I, and I was in the electric wheelchair, which is bigger than the manual wheelchair we have. And this kid was like, "Oh, yeah. I can fit." So, he crawled over me to get into the elevator. And my son, I could see his nostrils just flaring. And again, that was one of those days where I'm like, "I can't say something today. I don't have the energy to say something today." But I really wanted to say something today because I wasn't there for him. I wasn't a person. I was an object in his way. And I am a person. And my son, who has autism, is a person. And my niece who has arthrogryposis, is a person. And dammit, treat us like people.

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 Jacqueline from Alexandria, Virginia.

JACQUELINE: I can raise my kids. I can teach them right from wrong. I can help them become good people and it's not special because I'm visually impaired, because I'm legally blind.

SPEAKER 1: You can find more from our Parenting Without Pity project at RootedinRights.org/Parents.

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