A couple of months ago people were asking me if I'd read Good Weekend - the issue where The Two of Us was a story about a man with a visible difference and his Dad. I had not seen it, but my parents and a Twitter contact posted it to me. Several weeks later my phone was going off from friends asking if I was watching Australian Story. I love how my friends just know that I'd be interested in this story. People were actively talking about Australian Story on Facebook and Twitter that night - my heart sang, seeing so many people thinking about and discussing what it's like to look different - discussion without pity and without disgust. The power of telling your own story about looking different is huge.
The story was about Robert and Vincent Hoge - Robert was born with a large facial tumour and deformed limbs. He's had a number of operations through his life, and has endured teasing and questions about his appearance. He's also worked in a very public environment, married and become a father.
Robert Hoge is incredibly honest, frank and self aware about his appearance. He is comfortable with his appearance, comfortable with being ugly, even.
Like me, Robert has always been a writer, and has recently written a memoir called Ugly. I've read it and identified with it so much. Much of what Robert has experienced looking different have been things I've experienced too, and so at times reading Ugly was like looking back at my own history.
He writes about the 'Ugly Club' - and this resonates with me:
”There’s a power in the corridors of the ugly club. It arises from knowing the defining characteristic that grants you entry to the club, recognising the truth of it and realising hope can spring from that knowing. If this story is about anything, it is about that."
- Robert Hoge, Ugly
Sometimes I feel a kinship with people who look different, because of our collective experiences. I guess I'm part of the ugly club too.
I was also rather excited to read from Robert that he's read some of my work. He's an incredibly intelligent and articulate appearance activist.
Robert Hoge has written this piece especially for my blog. Thanks Robert - I hope we can meet one day soon. I am so honoured to publish this.
"I have a nose that looks like a veteran boxer decided to go and play football for a few years - it's squished and flat, bigger than it should be. I've got a scar down the middle of my face and ones across my temples from previous operations. I've also got big dents in the side of my head where my eyes were when I was born. I've also got two artificial legs that are very easy to spot when I'm wearing shorts and almost just as easy to spot when I'm wearing long pants because of the way I walk.
My parents raised me in a way that allowed me to comfortably incorporate my difference into my existence without it being the only thing that defined me. So we talked a lot about being disabled and being different in my family. There was a real, simple approach to it. My parents raised me with a love and a strength that really helped ensure I had the resilience I'd need to make it in the big-bad world. They got the balance right in acknowledging my disability and difference, helping me deal with it, but never letting me use it as an excuse not to give something a go.
I made a decision not to have further operations. I think for me it was a combination of both [function and aesthetic]. Certainly at the time, it was. When I was 14 I decided not to have further operations to improve my looks (make them look more standard) because I'd already seen that there was value in difference and I didn't want to take the risks involved with surgery.
I copped my fair share of teasing - and probably gave my fair share back! I came from a family of five kids and we were all pretty loud and argumentative, so I wasn't shy about saying my piece when needed. I felt pretty isolated sometimes. It felt like I was an outsider - way more different than everyone else. There were some low points but luckily I had a great family and a good set of buddies around me. I navigated my way through it slowly but eventually most of it had less and less power over me. It was more about what I thought about myself, about the restrictions I put on myself that made a difference.
The overwhelming majority of people [I encounter] are just fine. I think it's a lot better than it used to be. Some people assume I've been in a car crash, some people assume I'm ugly because I played too much footy! So, it's much better now than it was, especially because I try to engage people as much, and as often, as possible and let them know I'm comfortable about talking about this stuff.
I've done almost one of everything writing-wise. I've been a journalist, a spin doctor for politicians, a speech writer, a science communicator.
It's not the story of every person with a disability or a difference. There might be some common elements but there might be really major points of difference too. I think we need more stories from more people about being different. First and foremost, I chose to tell my story because I'm a story-teller. It's not a manual for how people with a disability or difference should live their lives. The only thing I'd say to them is to get out there and share their stories.
There were parts of Ugly that were hard to write - intellectually and emotionally. I had to answer a lot of questions to myself before I could work out what to say in the book. Some of those questions were hard to answer, but I think readers can pick it a mile off it you're not being upfront and honest.
Your difference isn't the only thing that defines you, unless you let it. Absolutely there will be times that being different sucks. But not always. You'll fall in love, you'll get a job, you'll fall out of love and you'll make a million dollars writing a smartphone app that everyone loves. Just keep at it and work out what your difference means to you and how much it does - and doesn't - mean to others.
On the aesthetic level, it's good to want to look nice. It's perfectly understandable. My issue isn't so much with vanity, it's that beauty tends to be defined in such a really narrow range. Everyone should go be beautiful in their own way.
We just need to be seen more. We need to see the full range of humanity and difference on display. If the media better reflected society, it would be so much richer and so engaging.
A lot of people think it's [the word 'ugly'] demeaning to me but I think it has come full circle. I think on any aesthetic, objective level people would look at me and say I'm ugly. I certainly think I am. But I've kind of broken the connection between the aesthetic truth of that and the intensely negative connotations that go with it. My difference has played a big role in defining who I am and I'm okay with that because I'm okay with who I am. That's why 'Ugly'."
Read more of Robert Hoge's writing on his blog.
Read about why Robert wants more stories about disability to be told on ABC Ramp Up.
Read The Two of Us.
(Photos supplied by Robert Hoge)