DVP Interview: Yomi Wrong and Alice Wong

On April 11, 2015, Alice Wong interviewed Yomi Wrong for the Disability Visibility Project at StoryCorps San Francisco. Below are short excerpts from their conversation.

On Yomi’s birth, racism, and ableism

Yomi: Great. I’m trying to think about any experiences that helped shape who I am, and of course, everything does, right? Like we’re the sum total of our life experiences. But in terms of my disability identity, there were a couple of things that came to mind. So when I was born, in 1972, in Manhattan, I was my mother did not know, in utero, that I had this disability [osteogenesis imperfecta] and I had a lot of broken bones in utero, as do most children, babies that have OI and my mother had a vaginal birth which then broke the rest of my bones. [LAUGH] So I was born with my, both of my arms and legs broken. Several ribs fractured skull, collapsed lung, and I was in pretty bad shape.

Alice: Mm-hmmm.

Yomi: And I was not diagnosed initially with brittle bone disease. Instead, the way my family tells the story, the doctors immediately thought that my mother was a victim of domestic violence. Or that she a drug addict.

Alice: Oh God.

Yomi: That she had done something to cause this.

Alice: [And] obviously that race played a role?

Yomi: Oh I think it played a huge role. You know, my family, I would say, was kind of solidly maybe upper working class from the Bronx, and my mother was really taken aback to be, to have that assumption… My father wasn’t there initially at my birth. He was somewhere else, and he came to the hospital later. And so, they were grilling my mom. She just had a traumatic birth. Seriously. I was broken to pieces. They told her I wasn’t going to live through the night. Right. If I did live through the night, I would probably last no more than 72 hours, and they were asking her really offensive questions. So there was this whole assumption that that my father maybe had punched my mother in the stomach or thrown her down the stairs, or that my mother was a heroin addict, or some kind of drug addict.

So this was back in the day when women would spend like a week in the hospital after giving birth. And my mom says every single day that she was in the hospital, doctors and social workers will come to her room and tell her to give me up. They told her that I was more than likely not going to survive. That she had quote unquote two normal children at home. My sisters were three and four years old. And they were pressuring my mom to sign away her rights to me. They told my parents that if by some miracle I lived beyond three months, beyond a year, that I would have no speech, that I would have virtually no brain function, that I would be in vegetative state, that I would never move, that I would never be able to take care of myself, and that I would be a tremendous drain on the family and on them, and that they should leave me there. And explaining to my mother that other families had done this, and nobody would look askance at her for doing it, and my mom was just so confused, and depressed, and scared. And she had, you know, the medical establishment, the experts telling her that there was no way that she could handle this. And leaving the papers there by her bed and every day, multiple times a day, coming in and saying you need to sign this paper.

And my mom said one night, or one day, there was a black nurse. It was not my mother’s nurse. She had heard about me and heard about my mom. And you know I’m in the NICU and I’m laying on lambswool because that’s the only thing soft enough for me to lay on, and so people were see, looking at me. I had all these broken bones and this Black nurse snuck into my Mom’s room and said, “You don’t have to give up your baby.”

Alice: Wow.

Yomi: [The nurse said to Yomi’s mom] “I just want you to know. I know that you’ve been resisting, and I think that they’re wearing you down. And I just want to tell you, you don’t have to do this.” She’s seen it before. She must have seen it before. And of course my parents and then my, my mother’s family, they were all like if she’s going to die, she’s going to die at home.

We just don’t have a history in our family of giving up our children. We don’t. We take care of our babies. So my mother brought me home. And so fast forward, I remember being, and I had always been told this story. Like, you know, all little kids wanna know about the story of their birth and so part of that story, and I think it was a point of pride for my parents…[Later on] So my dad took me back to the hospital. My dad tells this story, and he found like the doctor that was involved who said that I would, you know, have no ability, would not ever talk, would not feed myself, would not do anything. And he, chased this guy down, in the hall and said, “Do you remember me? I’m Mr. Wrong, this is my daughter, this is who you said we should leave here to die and that you guys would dispose of her.” And look at how stupid you are. Like, you don’t know.

Alice: In your face!

The story of Delinda

Yomi: So then fast forward, I remember being 5 or 6 and my aunt and grandmother were volunteers at Jacobi Hospital in the Bronx, and they would sometimes take me to to the hospital with them to like, see how they volunteered, and they took me to the basement of the hospital and they said we want you to meet somebody. There’s a little girl here with OI, my same disability. And she’s also black and she was a little bit older than me. But Delinda lived at the hospital, because her parents had given her up.

Alice: Oh my God.

Yomi: And I didn’t understand.

Alice: Right.

Yomi: And they were, and I was very young, I was like five or six, maybe, seven, and they would explain, well, she lives here. I’m like, what do you mean she lives here? They said, well, she, she doesn’t have a mommy or daddy, she, she lives at the hospital and the nurses and the doctors, they’re her family.They take care of her. And, I remember meeting Dalinda. There were other kids there but, like, they all fade from my memory. I don’t remember any other kid there except for Delinda. Because she looked so much like me and I remember she was in one of those, like, pediatric hospital beds.

Alice: Yeah, that look like a cage because they have high rails.

Yomi: Yeah, but to my mind, at like six years old, I thought it was a cage. And, from my vantage point, I’m like, is she an animal? And I remember vividly her sticking her little hand through the rail to like shake my hand and talk, and she was very chipper and cheery and my aunt and grandmother loved her, and they would go visit her all the time, and I was frightened, you know?

That could have been me. So my whole life, I have wondered about this girl and I heard from my aunt that the Delinda eventually was adopted by a nurse and I always wondered like what happened to her. How did she grow up? What life chances? But then I also thought you know, did they lie to her parents too?

Alice: Yeah I think you know. This idea that, not only are parents, you are unable to care, that we at the hospital can provide everything that your child needs. And I think that is where, you know, disability really is so underestimated. And I think this is where they think, don’t worry. All they think about is terms of medical care, right? That, don’t worry, your child with severe needs will be getting, will be, will be having 24 hour care. But they don’t ever think about each other, nurturing the social relationships. The impact of parents being away from their child and that child not having that socialization experience.

Yomi: Absolutely.

Alice: The impact of parents being away from their child and that child not having that socialization experience. Not having the benefit of growing up in a home, with a family. Whether it’s a birth family, or an adopted family.

Yomi: so it registered very early on for me that if I did not want to end up, say like Delinda, I needed to get a job. [LAUGH] I need to work, I needed to take care of myself. You needed to be twice or three times as smart as everybody else. I better be really good and I better.

Alice: Economic self sufficiency.

Yomi: I need to not be dependent on people because people go away…It’s like this, this girl haunts me. [LAUGH] You know, I hope she’s good, I hope she’s okay but I know that I don’t ever wanna be in an institution [later in life]. And I worry about that. You know? What is, what is, what does old age look like for me and you?

Alice: Yeah and I think you know, unlike some of the able bodied people when you think about these issues. Much earlier in our lives and that we actually might because of our disability and our different ways our bodies work may have to retire earlier ages. So that [impacts our] actually our earning potential and our attempt, our ability to save half. Which I have benefits was totally different from my non-disabled friends.

Yomi: It does I’m actually obsessed with retirement savings right now.

Alice: I think back about your mom and your aunts, and how instrumental [they were in your life] and, you [how] people might not think of them as activists, but by volunteering they were really a presence…, subtly informing and being around and being and influence on other parents [at the hospital]… and these are the kinds of quiet activism that, if you like, you know, we really need to highlight through stories like this, because we need to honor this…

Yomi: [My mom], she talks about being a drift until she found a community of other parents that had children with disabilities, and, and I think that’s really powerful.

DeLinda from the Bronx, New York, formerly of Jacobi hospital, if you ever hear this and you’re listening, I’ve been thinking of you and I carry you in my heart always.

Alice: Yes. Thank you Delinda. Thank you Yomi.