It was 1972, a different time. Pregnancy ultrasounds were uncommon and Mary Hoge had no idea of what was to come.
Her fifth child, a baby boy named Robert, entered the world with two severely mangled legs and a massive tumor in place of his nose that thrust his eyes to the far edges of his face.
After hearing the doctor describe her newborn’s features, Mary chose not to look. It took her a week to lay eyes upon Robert, and she decided then that she would never raise him. “I wished he would go away or die or something,” she admitted to her diary. “I just wanted to be finished with it all.”
Her husband, a manual laborer and the family’s sole breadwinner, accepted her decision. They returned home without their baby. Mary’s general practitioner told her she was making the right decision.
Mary is one of the heroes of Robert’s new memoir, “Ugly,” and not simply because, a month or so after his birth, she would come to terms with her son’s differences and bring him home. She was also willing to break taboos and speak openly of her initial reaction, first to her family and then publicly.
When Robert was four, his story became national news in their native Australia. He had received the most advanced facial reconstruction surgery ever performed there, and his family agreed to a profile in one of the country’s major newspapers. Mary didn’t hold back. She explained her first reactions to Robert’s birth, her shock and grief and her decision to leave him at the hospital. The reporter balked and suggested he not include those details, but Mary insisted.
“My mother said, ‘Please do, because it’s actually important. People need to understand that it’s okay if they have these kinds of feelings,’” Robert recalled. “‘They shouldn’t feel guilty for not going straight from shock and surprise to total acceptance in the space of a minute.’”
Robert and his family would continue to tell their stories publicly for years. “There are other parents who are facing similar challenges to us,” Mary had said, “and we probably owe it to them to go and talk about ours.”
Now, after a career as a journalist and political adviser, Robert is doing the same as a disability advocate. We spoke to him for Sophia, a project to collect life lessons from fascinating people (you can get them directly via Facebook or email).
“I need the world to have a better understanding of disability,” he said. “I’d much prefer that we spend time having awkward, bumbling, sometimes difficult, sometimes annoying, sometimes amazing and awesome conversations, because that’s the only way through it.”
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How did you come to learn that your mother initially didn’t want to take you home?
After I was born, one of the things a doctor suggested to her was that she should keep a diary ― she should write down her thoughts and feelings about having a son who had massive facial disfigurement and two deformed legs. So she did. She wrote about the factual circumstances around my birth and what happened to me when I was young, but she also wrote really honestly about her own feelings.
Now, I’m sure it was valuable for her to write that all down, but she could have hidden it away. She could have put it in the cupboard and locked it up. But she never did. That little blue diary was either on her bedside table or beside the couch or on the kitchen table ― it was never hidden away from us. Even before I could read, I got the sense that it was one of those objects of power that exist in a house, something that has purpose beyond just its physical meaning.
And because it had words in it and it was around all the time, I would ask my mum to read to me from her book. So that’s how I learned of her decision. Eventually it got to the point where I’d say to her, “Can you read to me from the book about when you didn’t want to bring me home?”
Her diary was a really important resource to me. She died about 18 years ago, so she wasn’t around when I was writing my book, but I think her honesty and her frankness gave me permission to be really open about this story as well.
I imagine some people don’t appreciate your book’s title, “Ugly.” How do you respond to them?
I do think about it a lot, and it is a bit of a provocative title. But ultimately it’s a memoir and it’s my story, and I genuinely think I’m ugly. We wouldn’t all agree on who the most beautiful person in the world is, but there is an aesthetic standard of beauty that I am a long distance away from. And I’ve got no problem describing myself as ugly. I’ve got no problem if people disagree with that, either.
My story broadly takes an arch that sees me reaching a level of acceptance with my appearance. But a point I was making in calling the book “Ugly” is that we can’t convince kids that differences in appearance don’t matter by pretending they don’t exist. I think sometimes adults are too falsely polite in saying, “No, don’t worry, everyone’s beautiful. You’re all beautiful.” It’s like, all kids have some beauty, but if a kid is genuinely aware of some part of their appearance which most of the world would suggest to them is not beautiful, then I don’t think that’s the best way to help that kid.
So yes, I chose “ugly” because it describes me, but I have absolutely no right and no inclination to pass judgment on other people.
You write about being teased as a kid, but you also say: “Outright sympathy could be just as frustrating. Sometimes passersby would tilt their head and deliver an undeserved smile. ‘Isn’t he wonderful/inspirational/amazing,’ the smile would say.” How would you prefer to be approached?
It’s hard. I think the best circumstance is engaging with someone around their reality and having a conversation with them based on their actual existence, and trying to increase your understanding of them and who they are and the issues they face.
Now if you’re passing in the street and someone smiles at you, you probably shouldn’t get cranky over that, I get it. But where possible, I’d actually rather people just try and have a conversation with me, even if that’s strangers saying, “What’s going on with your face? Were you in an accident?”
Now that’s just me and that’s not a prescription for everyone. But I often get frustrated because you’ll see an article that is like, “7 Things Not To Say To Someone With A Disability,” or “10 Things Not To Say To Someone In A Wheelchair.” I’m sure they’ve been on HuffPost before. On an individual basis, I think they’re probably fine and none of them are necessarily wrong. But my concern is that’s just gonna leave people with the impression that they shouldn’t talk to people with disability at all because they’re gonna say something wrong. I fear the message ends up: Be very careful when you talk to us, because you might get something wrong and I’m gonna get mad at you. And my message is: I’m not going to get mad at you.
I need the world to have a better understanding of disability. We’re way, way behind. And I think in some ways we’re especially complex because disability is really broad. I’ve got no legs, but my experience of the world is entirely different from people who, say, have a visual impairment. Just because I have a disability, I don’t necessarily get to speak for them.
I’d much prefer that we spend time having awkward, bumbling, sometimes difficult, sometimes annoying, sometimes amazing and awesome conversations, because that’s the only way through it.
Andrew Solomon’s groundbreaking book “Far From The Tree” addresses how disabilities and other differences really define children’s identities. Do you relate?
Absolutely, and I’ve spoken on a panel with Andrew. My disability and my appearance have played a big part in defining my life. They haven’t defined my life 100 percent, but they’ve played a big part in defining my life, and probably on the balance in some annoying and negative ways, but not entirely. I sometimes wish I could run this Star Trek timeline experiment so I could see what my life would be like if I was “normal,” versus what I’m like now.
But I was the first person in my family to go to college. My father left school at grade seven. He wasn’t very good at school and didn’t like it, and his father in grade seven said, “Do you want to stay in school or do you want to get a job?” And my dad said, “I want to get a job.” So he worked as essentially an unskilled laborer all his life. But when I’d come home with a bad math result in grade nine, my father would look at me and say, “Robert, you’re not going to be digging ditches for a living.” And he was right. It emphasized to me that I had to use my brain and I had to go to college and get some good professional skills.
Now if I was born perfectly “normal,” who knows? Maybe I would have still gone to college, maybe I would have still studied journalism... maybe? But I don’t think so. So it’s absolutely shaped my life in a lot of really difficult ways but in a lot of really strong positive ways, too.
How has being a parent changed you?
Being a father woke me up to how open kids are to difference right from the start. They’ve got to incorporate in their universe stories about talking bears and talking trains and then everything else ― mom, dad, cats, dogs, everything else in the world. And it’s actually really easy for them to incorporate difference and diversity in their worldview if that exists right from the start and isn’t hidden or treated as precious.
With my older daughter, I had this vague dread that she’d get to a certain age and realize how different I was. I thought, she’ll get to 4 and then she’ll realize how different I am and she’ll recoil. And she got to 4 and that didn’t happen. “Oh,” I thought, “maybe when she’s a bit older. She’ll get to 5 and she’ll realize how different I am.” And she got to 5, and then 6, and she was fine. And finally I realized well, no, she actually just gets it.
Her dad’s got no legs and he’s got a funny face and that’s just part of her worldview. And I think that’s actually so important for displays of diversity in media and culture, and that’s around gender and sexuality and race and disability, a whole bunch of things. Because if kids are seeing those representations, then I think they’re going to be much more accepting of them because they’re incorporated into their reality from a really early age.
This interview transcript has been edited and condensed.