Transcript: Kai and Wendy

Note: Transcripts may contain errors. Please check the corresponding audio before quoting in print. Copyright © CBC 2018

ACEY: Ok. We're going to play an imagination game. When I ask you to picture a person with a disability…who comes to mind? Do you picture… yourself? Maybe a friend or family member? If not… this is who Wendy imagines you see…

WENDY: So if you don't know a real life person with a disability you don't know that we're just going home and doing laundry too and watching Netflix as well and you know making sandwiches and cuddling up on the couch. You are either supposed to be extraordinary right in something unbelievable and a Paralympian or your life is really sad and depressing and horrible but there's no space in between. Right. So we live firmly in between

ACEY: This is Wendy Porch

WENDY: I am the executive director at the Center for Independent Living in Toronto and I am a mom and a person with a disability.

ACEY: And this is Kai he works just downstairs from me in CBC Music

KAI: and I'm also a legally blind person and I find that was a funny expression because it suggests that there's illegally blind people walking around out there in the world. But essentially I have no central vision

ACEY: Wendy and Kai both identify as people with disabilities.

WENDY: but you know language has changed I think in terms of how I identify my disability over the last few years. There is now a community of people who call themselves people with limb differences. So I kind of like that phraseology so I've been using that lately. But basically I was born missing most of my right arm and half of my left hand.

KAI: So if you imagine a pair of sunglasses where the blacked out part the front you can not see me you could see kind of around the sides. That's exactly how I see. And it's quite a challenge most of the time but as a parent it's especially challenging.

ACEY: And that's the other thing they have in common  -- they're both parents. I'm Acey Rowe. This is The Doc Project. In conversations around disability there's a group that's often left out. We hear about kids with disabilities, and what its like for the able-bodied parents rasing them. But it's rare to hear from parents with disabilities.

WENDY: You know my life's great… I love being a mom…

ACEY:Before we get to Wendy and Kai as parents, we'll start with what it was like for them as kids...

KAI: I was born with perfect eyesight and I had perfect eyesight until I was in grade 10. I had excellent grades up until grade 10 and then I just started skipping school and one day while I was skipping out I was asked by the teacher to go down and get a note from a visiting nurse. So I went down and the nurse said Why are you here and I said I need an eye test. She said OK cover your left eye and read what's on the chart. And I began to do so as she said You're kidding right. And I said no she just said you need to see a doctor right away. I was diagnosed immediately with this condition.

And within two years I was legally blind because it took two years. I could not get the support by any service organizations to help reading my materials or enlarging my books. So I sat in a classroom basically ignored by teachers because they I couldn't do the assignments I just took up space. The only person with a disability at my school and not blind enough to get help.

WENDY: I do remember a kind of dawning of this realization that I looked different and it came in interactions with other kids. You know I remember being in kindergarten and everybody's trying to make friends desperately. And there were kids that didn't want to play with me because I looked different and I didn't understand it and I remember going to my mom and dad and saying I don't I don't know what's going on why don't they want to be my friend. And then and then having this explanation that I was a bit different. That was a bit tough. Growing up I think that was kind of carried through though. I don't I don't walk around feeling different. It's just when you see it reflected in someone's face.

KAI: The predominant feeling that I had is my eyesight was deteriorating was an aloneness. Something was happening to me that nobody understood. I was the only one experiencing it. Nobody could help. So there is basically just trying to figure it out by yourself.

And I had developed a resourcefulness to get the things that I needed. For example I wanted to work in a mall at a clothing store but I could not read the tags on the jeans. So I would say things like oh you know I forgot my glasses today. Do you mind just reading the tag for me and you just like make up these little tricks to help kind of get around sort of things because you didn't really want to go into the details of your life and when you have an embrace that part of yourself with pride yet anyways is a bit of shame so you don't really don't really talk about it anyways.

WENDY: I didn't think I was going to be a parent as a person with a disability. I wasn't sure if I was ever going to be married you know. So growing up as a kid with a disability and never seeing yourself in any of the stories Cinderella does not have one arm. So because I'm missing I'm I'm missing the kind of latter half of my left hand. I don't have the ring finger so I remember consciously asking my mom like how am I going to get married if I don't have a finger to open.

Is it ever going to happen for me. Being a parent was kind of an extension of that for me. So I just didn't think it would happen. And it did and it did.

KAI: My condition is hereditary. And so when contemplating parenting as I came older it really pushed the question back to me like OK so if your child has your eye condition how would you characterize your life. Are you happy. Is it hugely challenging. Is the world close to you because of this or is it open in some way that it took me a long time to really understand that this poor eyesight has given more to me than it's taken away.

WENDY: I talked to my husband about this quite a bit when we were thinking about getting pregnant. And you know what. What was that going to look like. And it was a tricky conversation too because because I've never been given an explanation for my disability. I didn't know if it was something that was genetic and would be passed along or not. And that would not have been a reason for me not to have had my child but it would be something that I would want to know about ahead of time. So we had a number of conversations about how far do we want to dig into this. Do we want to see a genetic counselor or not. And honestly my husband didn't care. My husband did not care and he has never cared for a second about me having a disability ever.

KAI: My wife didn't seem to think the disability was an issue at all. I shared it with her but she was just so keen on being a family that that's where our focus lies. We went very quickly to that and decided just select any issues fall where they do.

WENDY: I eventually sort of came around to not really caring that much either so we didn't really do too much digging. But having said that the 20 week scan where you go and they they sort of do the ultrasound where they look around and everything and all of the baby's body parts and so they're not supposed to tell you anything during that scan and there's all kinds of signs in Mount Sinai that say DO NOT ASK YOUR sonography or anything. Well I asked about my kiddos hands and I said Can you just tell me like how many fingers does he have. And she understood immediately why I was asking and she said 10 here you can have a look yourself. I said thank you very much for telling me. And I cried at the time you know it was sort of a weirdly emotional moment. I didn't think it would be but it was.

KAI: When we became pregnant we're moving towards the birth of our son. I never really spoke about my eyesight it's just such an integrated part of my life now that I didn't need to actually set the table with doctors or with or with friends. We knew that if he was to inherit my disease it would probably show signs until he was in high school anyways so it didn't seem to merit a conversation except for those situations where for example we'd be in prenatal class and they were kind of relating information from a border from some materials that I couldn't read at that time I had to speak up.

WENDY: It was tricky actually being a mom to be with a disability. One of the health care providers that I was seeing in this kind of prenatal phase was in a room with me and my husband and a resident. So it's a teaching hospital and she grabbed my sleeve of of the arm that I'm mostly missing and yanked it up and said to the resident well see you know she's doing great but as you can see she was born with this kind of deformity. But she's still doing really really well. And it was so humiliating for me because in my life nobody talks to me like that anymore. You know as a kid with a disability you get a lot of that but nobody really talks to me like that anymore. So I had to have a conversation with her and say this is not appropriate. Why would it be appropriate to talk to me like that and to put me on sort of show as an object here in the context of me coming in for care and like it really affected the trust I had in our relationship.

The day I went into labor was a day I will never forget. And I stayed in labor for two days. I was in labor for like basically 28 hours. So it was pretty intense. But the day that Jasper was born to this day literally IS STILL THE BEST DAY OF MY LIFE. And when I saw him for the first time I recognized him I knew he was mine.

JASPER: I just got born and I had to wake up. No no morning chores.

WENDY: when you were a baby?No no morning chores. But when I saw your face the first time. Yeah. Yeah. I knew that you were mine.

KAI: Oh my gosh. When I went to the hospital and my wife gave birth it was funny because my wife's Brazilian and she asked her sister who was a pediatrician to come to Canada for the birth because she wanted the confidence of having a family member nearby. So I was not allowed in the birthing room. I had to pace around like a 1950s dad waiting to find out about the birth. And they led me to some room where he was lying on my wife Patricias chest swaddled in beautiful blankets and I got to pick him up for the first time for a very brief time and it's transcended to a transcendent experience.

KAI: What have you got there?

MATEOS: Captain underpants, dad

KAI: Captain underpants?

MATEOS: Should we start from the beginning?

KAI: Yeah its always good to start at the beginning you describe things to me ya know?

KAI: I know there's a lot that I can't do in a conventional way. I've never been able to teach my son to read. But what I could do is I would say to Matteo's what's the picture on the page Matteo's and he describe ah there's a boy holding a pumpkin dad. I said that's great. Here we go. Once upon a time there is a boy named Jack and page after page. I would just he would tell me to picture and I would describe the story and I realised in time that maybe he wasn't learning to read but he was learning to listen.

WENDY: The first time I held Jasper was. It was significant for a lot of reasons I think that goes beyond what happens for most mums. Because of my disability I knew that holding him was going to be difficult because of course with the baby you're supposed to hold the back of their neck in the back of their head. And I had been saying to everybody throughout the course of my pregnancy I'm really concerned about how I'm going to hold my kid when he gets here. So do you have any expertise or anybody that I can talk to about this and I could not find anybody to answer my questions. I didn't know if I was going to drop him or not. When he finally was given to me. But yes they handed him to me and I was able to hold him it was all wrapped up and it was pretty amazing. But I still worried because I knew that coming next was the hard part breastfeeding burping Birmingham. So these in the end are things that I couldn't do on my own . And the only reason why we were able to sort of muddle through it is because my husband's work had a policy they had just passed a sort of exceptional circumstances policy around paternity leave and so he was at home with Jasper for four months. But otherwise I literally don't know what I would have done for those first four months.

KAI: So it was probably about 18 months before my wife decided to leave me alone with our son at home. I'd been changing probably a thousand diapers and and fed him. So I've demonstrated inside the home in front of her. The ability to care for him. So she went off and probably a half hour into us being together Matteo's needed to be changed. So I did that quite easily and then pulled his little pants back on and then went about my business left him in the crib. And of course he cried for about two hours nonstop and I could not figure out what was wrong with him. Until Patricia came home and I said Patricia I don't know what's going on and he's been trying crying for two hours since she went up to the crib to have a look at him she said. You put both his legs down one pant leg. And so once she was able to pull his pants off and put him on properly of course his crying stopped. But that's just a typical example. Sometimes when you don't see what's going on that's the stuff that happens it doesn't hurt him but it was definitely odd.

WENDY: Jasper and I were alone for the first time after Alex went back to work. After four months and I was petrified I was afraid that something was going to happen that I wouldn't be able to manage diaper changing was very challenging for me at the start because they're very squirmy so I had to get a system where I could lock him in I had a little belt that I could lock him into. And then you know tried to change his diaper but I mean I got pooped on so many. And you know the thing is one of the things around having a disability and going through that being a mom with a disability is that I was reluctant to do that stuff in front of people because I found that when I would be out with him and I would try to take him out of his stroller and wrangle him into position for a diaper change. There was a lot more surveillance on me. People watching me because they were concerned about him did I know what I was doing was I actually supposed to be out on my own with a baby. Did I need help. And that made me feel less confident. And so somewhere in there I just kind of decided I'm not going to do that kind of stuff in front of people if I don't have to. Which is really unfortunate. Right. But it made me feel kind of vulnerable.

KAI: The challenge with having poor eyesight is you never know what you're going to encounter in any given situation for example. And you would typically take your child to a park and play in the climbing area of the jungle gym. I would have to be literally beside him this whole time to ensure that he was in my field of vision that I could see him through the sides of my eyes. It happened on one occasion that I was standing about 10 or 15 feet back from the jungle gym talking to another parent. And all of a sudden I realized I couldn't see my son. I couldn't find my ran around the whole thing and all of a sudden the panicky feelings started inside that I'd lost my child. I thought I saw the corner of my child running to the street and so I bolted as fast as I could. When I got there it was a dog and the panic that came over me was incredible. So I ran back yelling trying to get other parents to help me legally blind people. Like what does that mean. I said I'm leaving and I can't see her. I can't see my son. My sex not very good. And they immediately understood and we all ran around and finally were able to find him and my adrenaline came back down but thankfully that situation with the climbing gym was an isolated one.

MATEOS: Now I'm getting the hang of what's happening. So I'm like OK I know. Guys maybe not gonna see me so I need to see him.

WENDY: People that know me have been very positive. Even the teachers who we were at parent teacher night and she said What a wonderful kid you have. So I'm at I'm telling you that because I am literally bragging. I'm so proud of him but the people that don't know me. I think you know there have been a lot of strange sideways looks. I feel like I have to do a better job. You know just making sure that my kid is not not ever messy because there's a bit more judgment involved there.

KAI: I think if a parents saw the way interact with my kid the visual impairment means that I'm really much more of a friend than a parent. I pick him up at school once in a while and I watch other parents all talking to each other. Perhaps they're on their phones and their children are off in the distance playing with each other running around different things. I don't do that. I bring balls to the school and I try to engage them immediately we go off places and we do things together because they figure that rather than me chase you know him around the school yard all the time just engage him in some activity. So I think I'm the only parent actually that shows up with gym clothes to pick up my child to kind of engage them and stay engaging him while other parents get to seem kind of passive on the sidelines.

MATEOS: He's a really fun guy. To play with.  Because when I go to the YMCA I see a lot of people want to play with them. Any kind of sport. Its just very great. Cause I get to hang out with my friends with him. And it's very good

KAI: Right now. Mateos is in elementary school and one of the things that the hardest for me is that more and more as he's drawn into the school system. There is more performances from the stage. There's more sports city becomes involved in it as a parent you're sitting in the bleachers watching your child perform. And I go to school plays and he performs and he sings and I can't see him on the stage. I go to his little soccer games and I sit on a bench with all the other parents who are cheering their children on. And I cannot see Him I can't see when he scores a goal. If he's looking over at me and that breaks my heart that I just can't be there when he looks over and scores a goal to see that his dad smiling and laughing and clapping for him. That's hard and it's just something I can't share in the same way. I know that he'll understand that eventually I just hope we could find a way of talking about the experience of so that we can share it in someway together.

WENDY: He knows his mom's different. He's not embarrassed about my disability at all. And that was something that I had been concerned about. You know he's more embarrassed by my singing. So he will not let me sing. I like to sing and we do things and he will actually grab me and say Mom Mom just be quiet. Everybody's looking at you. Stop singing. But he doesn't say that to me about my disability. Even though we have been in situations where I know he's noticed that people stare.

KAI: Right now he knows the word blind and he knows that there's some I just can't see to do. The limited things I can't read the labeling in grocery stores he has to help me with that he knows those kind of things.

MATEOS: When I go with my dad. He can't read the menu. So sometimes I need to read the. Menu what there is and if I don't know the word I spelled to him and he knows what it is.

KAI: When you're a parent and you have a child it's in a school you realize pretty quickly that there's a community in this school and the school tries to communicate everything that is doing to all the parents to help elicit their support and they're not very good at this point at communicating in different ways so that people with different disabilities can get that information and I think that's what I would like to see the most as a disabled parent moves the world with your child. It would be great to have information communicated in a way that can make you a full part of the community.

WENDY: I've been concerned that because of my differences he will be somehow treated different as well. So I've tried to get ahead of that. I actually went into his classroom. I went to the teachers first of all and said you know this is something I'm concerned about. What about me just coming in and talking to the kids. They thought it was a really good idea. So I went in and I read the picture book version of Wonder which is a story about a kid with a facial difference then you know I said Do you have any questions for me. And they thought really hard about it. And the one said to me Well can you do let.

And I said Yeah I'm actually really good at Lego. I'm kind of a Lego Master Builder. Thank you very much. Okay okay. And then another one put their hand up and said wah can you clap. And I said you can clap I just sort of clap on my lap like this. Oh OK. And then they look completely bored. They were done. And can we go play now. And that was it.

JASPER: oh here lets see if this could float see mom?

WENDY: Mm Hmm

JASPER: But this is fire (funny noise)

WENDY: AH! Its a farty ship (laughs)

JASPER: You crack me up (laughs)

KAI: We went to a swimming class recently where they hand you a clipboard to sign in your child in such small little space as yours was a sign and on it it always happens and I have to ask the new lifeguard every time excuse me I'm visually impaired. Can I have your assistant signing in and a week ago he looked up at the lifeguard and said he's blind but he's still a good dad.

WENDY: My greatest hopes for Jasper are that he's happy that whatever he whatever he wants will work out for him and that he knows that we're here to support him and all of that.

KAI: When I look at Mateos my son I think of all the things that he gets. I want him to figure out how to independently solve the challenges that comes up for a lot in life for him through being a resourceful person and I hope that I demonstrate through my work arounds with my poor eyesight that he too can do this

WENDY: He talks about disability and he'll say Well Mom you you have a disability and you're a little bit different but that's great isn't it. [00:24:46] And I don't think it's a big deal for him. But I do think it's fantastic that his world includes this. You know that this is not something that he's afraid of. He just accepts this as part of his life.

MATEOS: How can I explain this?...I live with my dad and my dad is blind. And some things differently. So sometimes I help him. I just do what I have to do.

JASPER: My mom, she's good and kind. Even though she has like a little disability. Yeah. She has just one finger right here. Even though its like that she still could do anything.

ACEY: Mateos and Jasper. And their parents respectively Kai Black and Wendy Porch. That doc was produced by Sheyfali Saujani. And edited by Veronica Simmonds. Kai and Wendy have had to adapt to the world around them, one that routinely isn't designed for them -- or even with them in mind. They spoke more to that on our website -- that's at cbc.ca/docproject  

Also, we're curious to hear from you -- especially if you identify as someone with a disability. As a parent, how have you had to adapt to -- or change -- the ableist systems around you?

Like how Kai reads with Mateos.And Wendy visiting Jasper's school. This is conversation is happening on our facebook page. That's facebook.com/docprojectcbc. Please, join in.

The Doc Project is produced by Veronica Simmonds, Alison Cook, Tanara McLean and me -- with special thanks this week to the CBC AbiliCrew. Althea Manasan is our Digital Producer with backup from Jonothan Orr. Our Senior Producer is Jennifer Warren. I'm Acey Rowe. Thanks for listening!