Meet Robert Hoge, the ‘Ugly’ Human Living a Beautiful Life
"Not everything has to be okay, all at once."
“Shattered. Brokenhearted. Afraid. Upset. Any adjective would almost describe how I felt — providing it wasn't describing happiness. I was destroyed.”
Fifty years later, Robert Hoge still reads the journal in which his mom Mary documented her most intimate thoughts after he was born. “She was expecting a lovely fifth child as her birthday present,” which was the day after Hoge was born. “And alas, she got me.”
Hoge’s appearance wasn’t at all what his mom expected. He was born with a large tumor in the middle of his face that pushed his eyes to the sides of his head and two severely mangled legs. His mom refused to take her baby home because she was worried about how his difficult upbringing would affect her other children.
“[My parents] cried together,” he said in an interview with The Profile. “It’s obviously a bit of a challenge seeing what was, you know, a monstrously ugly baby, not what they were expecting, not what they were prepared for. And my mom just didn't want to see me straight away.”
When she and her husband returned home without their newborn child, his mom kept second-guessing her decision. So she decided to give her kids a say. During a family meeting around the dinner table, she asked them to take a vote on whether they wanted Hoge to join the family. His siblings all voted that they wanted his parents to bring him home.
Even though he got a second chance at life, it wasn't easy. He spent the majority of his childhood at hospitals where doctors attempted surgery after surgery to remove the tumor. The procedures left Hoge with severe deformities on his face.
At age 14, Hoge's parents began talking to doctors about yet another major operation that would fill in the dents on the side of his head, reconstruct his nose (again), and bring his eyes a little closer together. The biggest risk? There was one in a four chance he might become permanently blind. So his parents said, "You're almost an adult. We'll let you make this decision."
For the first time since his birth, the fate of his face was in Hoge's own hands. He struggled with the decision until he heard his brother say, “What use is it being pretty if he can’t even see himself?”
He declined the surgery, and from that day on, Hoge has focused on accepting his imperfections, differences, and all the "ugly" things that made him who he is.
This Q&A has been lightly edited for clarity and length.
(Below is an excerpt of the interview, but I encourage you to listen and watch to the full interview here.)
In her journal, your mom wrote, “I wished he would go away or die or something. I just wanted to be finished with it all.” What did you make of these words as you were growing up, and what do you make of them today?
HOGE: It was a bit difficult to grapple with when I was growing up, but not overly difficult. The way I like to explain it was that I knew the story had a happy ending.
Now, more so than ever, I think a lot of people expect things to be perfectly formed, perfectly mature, and wonderful on arrival. But they're not. You don't go from the first scene of a movie or a book to the last scene of a movie or a book. That journey in the middle is really important.
But certainly, my mom didn't want to see me when I was born. So for the first week or so of my life, the doctors and nurses would say to my mother, “Come on, Mary, let's go see your son.” Because other than my deformities, I was perfectly healthy. I was just in the nursery, but my mom kept refusing day after day. She just kept saying no.
Then a week after I was born, she finally changed her mind, came up, and saw me. And as a coping mechanism, she decided then and there that she didn't want me. She just said, “No, I don't want anything to do with his baby. I just wish he'd go away. Wish I didn't have to deal with the problem.”
And I do reflect on that a lot. Because when you can actually understand, you can see it as quite a reasonable and normal reaction to that kind of shock. And I don't find it particularly distressing as an adult.
I do know that it might have taken my parents a month, but they took me home. And they were incredibly loving, wonderful, and caring parents, who equipped me with an awful lot of really important and useful strategies to get through life.
But I think there's an underlying lesson, and this is something that served me really well throughout my life.
Not everything has to be okay, all at once.
If you can accept that and work through some of the challenges, and perhaps understand that getting to clarity and getting to an outcome you want often involves a whole lot of messiness along the way, then that's actually a really valuable thing.
How old were you when you realized you were different?
Probably by the time I was 5 years old.
My mother was incredibly self-conscious because a lot of people would stare and point. And not just kids, but also adults. Some adults were incredibly rude and would come up and ask my mom unnecessary questions. So there was a bit of a sense that, well, there is something different or something wrong with me.
My father had an entirely different coping mechanism. He would take the kids swimming to the local swimming pool. I love swimming. And of course, when I'm swimming, I'd have kids pointing at me because I didn't have legs. And my father would not feel an ounce of anxiety around that at all. He just told the kids to go away because their parents wanted them or something.
And then, certainly, when I got to school, it was really obvious how different I was from other kids. I'd had some operations by then to kind of move my eyes to the front of my head. But I still looked a lot different from other kids. Other kids had legs. I had prosthetics by then because my feet had been amputated.
I wouldn't classify it as vicious or targeted bullying from large groups of kids. It wasn't that, but certainly there was sometimes teasing, sometimes name-calling, sometimes bullying. And so, by the time I was in year one, year two, I had a really good idea of how different I was from most other kids.
How were you eventually able to reframe the word ‘ugly,’ and begin to own it in a way that wasn't hurtful?
What I got a sense of reasonably early on is that everyone's got something going on in their life. You know, there's me, a kid who's ugly and doesn't have any legs, there's you who's a little girl from Bulgaria, there might be another kid who looks perfectly normal and speaks perfectly good English, but her parents are getting a divorce or her dad's an alcoholic.
Spending a lot of time in the hospital gave me an opportunity to understand that almost everyone's got something in their life that is important to them and that they feel different about. If you can actually step back and understand people in a way that acknowledges and doesn't dismiss their difference, it’s really powerful.
We all have scars whether they’re visible or not. And many of us hide them out of fear that people might be repulsed by them. What are some practical questions you believe we can ask each other in order to have more empathy for one another’s experiences?
Asking people about their experience and having a conversation with them.
I'm really open to people having a discussion with me about my difference and my disability and how I look because I've become closer friends with people. And one of the things I like to do is give people signals that I'm comfortable talking about that.
I think asking out of curiosity is really, really valuable. [It’s also about] understanding that there’s a myriad of things that go into defining people — who they are, what they believe, and how they behave. And not expecting that there's a single cause for everything in someone's life.
So I think being unafraid to be open and ask people is really powerful. And this is not entirely accepted by everyone in the disability community, but I'm really comfortable with people asking me why I'm different.
For me, that's a lesson that I take all the way back from my mother. We can't get from a challenge to total acceptance without the journey in the middle. So I think if you can ask people how they are: “Tell me a bit about yourself. How much has your experience as a child having this challenge shaped you? Tell me about your life now?”
You’ve said, "Beauty is a contested space. Notions of what is or isn’t beautiful are constantly changing. Beauty isn’t the end point of a treasure map; it’s actually a million different destinations, with a million different ways of getting there.” What does beauty mean to you now?
Oh, wow. I think I have a beautiful wife and beautiful kids.
It's really hard to define [beauty] as one thing for me. I think, for me, it's about an essence, an energy, and a sense of self. I'm incredibly engaged and attracted to people who have a good sense of themselves and are comfortable with who they are.
You can absolutely see people who are aesthetically pleasing and might meet very common definitions of beauty, and there's nothing wrong with that. But I'm incredibly drawn to people who just have a very good sense of themselves and a comfort with who they are.
It’s a big world, and a lot of people are attracted to a lot of different things. I might have a broader sense of beauty than some other people. But it's not that my sense of beauty is the right one; it's that different people have different senses of beauty. There's not one narrow definition of beauty.
And that's why I talk about it not being a kind of treasure map — you're not trying to find a path to something specific. It's that there's almost an infinite way to find beauty in and through others.
What does the word “success” mean to you?
Success to me means being whole. And I think it goes to the point of saying, “Are you at peace with who you are? Do you feel like most parts of your life are working well most of the time?”
But for me, success is that sense of whether it's overcoming physical, emotional, psychological, financial, or whatever kind of other struggles to get somewhere that you are comfortable.
My definition of success is not yours, it’s not anyone else's. Success is about your level of comfort with yourself. Do you feel whole and fulfilled? Do you feel engaged with the world, with your family, with your friends? Do you feel like you're doing something important and adding something valuable to the world?
And if you feel like you're doing that most of the time, then that sounds pretty successful to me.