"When my son asks why people are staring, I say it's because we're famous. We're not."

Mia, as far as I could tell, was more gentle than feisty.

But it seemed to me her body had shaped her worldview in some ways.

‘I’m angry,’ she said at some point. ‘I don’t like the human population. I like the people in my life, but I find that people in general are shitty, selfish, unaware that their actions are hurting others. It’s hard for me to trust people.’ This soul-shaping is of course not particular to dwarfism or to any other imperfections. Any appearance is likely to become the weather, or soundtrack, of our lives. Maggie Nelson writes in her memoir, The Argonauts: ‘Having a small body, a slender body, has long been related to my sense of self, even my sense of freedom.’ Imperfect Body Surface, though, possibly shapes us most profoundly. Even Mia’s entry into motherhood was shadowed by her appearance.

By the time Mia’s colleague snatched the baby away from her, Mia was already an experienced single-parent of Ethan, who now was nine years old and 70 centimetres tall. Ethan’s conception wasn’t planned. Mia realised she was pregnant shortly after breaking up with his father, the Californian man. At only 24, and single again, she felt deep ambivalence about her pregnancy, but her mother convinced her to keep the baby, telling Mia it could be her only chance, as she might never find another partner.

Mia’s father had a different view. ‘If the baby comes out with dwarfism, he’s going to have the horrible life you did,’ he said.

‘How did you feel about your father’s response?’ I asked. ‘I cried… I didn’t want my baby to have dwarfism either. During my pregnancy I found out he had it, but everyone else said he’s going to be cool, he’ll be just like you… I decided to go with that, but I knew what to expect for him because I lived that life. Like, bring it on! Bring on the bullying.’

Watch: Five-year-old Floyd Henry has dwarfism. This is his story on 60 Minutes Australia. Post continues after video. 

I was finding it difficult to continue our conversation, as I already knew that the bullying had indeed come on. I was also thinking about my own child. Since he was diagnosed with albinism, the possibility that he may be bullied because of his difference had become my recurrent nightmare. Mia, in her straightforward manner which I liked, told it like it was – life was tough for her boy. Ethan couldn’t be as physical as his classmates. Playing contact sports, like football, isn’t safe for people with dwarfism, and anyway he couldn’t ever be fast enough. Instead, he painted. His artistic inclination wasn’t in his favour at school either; he was pushed around and had no friends. Often he didn’t want to leave home, anticipating ridicule. At the sight of other children on the street he’d often hide behind Mia. When they were out together, Mia put on a brave face for Ethan’s sake, telling him people paid them all that attention because they were famous.

It’s not about giving him a false sense of identity, she said, but to make him think we’re actually cool. At home he sometimes yelled and threw stuff. ‘I let him do this,’ Mia said matter-of-factly. ‘It’s a release for him. I used to do this too as a child.’

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Mia felt that Ethan benefited from their shared condition: ‘He looks at me and knows there is nothing he cannot achieve.’ Ethan was also the main reason for Mia’s venture into activism earlier in the year. Previously, she had little involvement in the dwarfism community, preferring to think of herself as being beyond her Body Surface, even if most people she met were obsessed exactly with that aspect of her. But one day, when Mia and Ethan were at Brisbane Airport and she was struggling to get her luggage off the carousel, it struck her how not only did nobody there offer her help, but many stood by staring at her and her child, sniggering.

The heightened aloneness Mia felt that day, coupled with her perpetual worry about Ethan, prompted her to launch a social media campaign to try and normalise dwarfism. Mia began blogging about her life, showing photos of herself, Ethan and her then-partner, another American man with dwarfism, doing ‘normal stuff’ – walking the dog, hiking, attending a sports game. Journalists caught up on Mia’s activities and it was then that a series of upsetting articles appeared. ‘I was adamant that my story wouldn’t be sensationalised and of course it was.’ The press focused only on the most disturbing aspects of her life. Ironically, the more Mia tried to show how like everyone else she was, the more she felt defined by dwarfism. So she ended her campaign.

In the images Mia had posted she always looked striking, whether she was playfully made-up, or wearing sunshine-yellow shoes or a wide-brimmed hat. While many saw her as diminished because of her appearance, Mia seemed to be using the same medium to fight back, attuned to the expansiveness of self-definition fashion offers, adding layers to herself with every new outfit. Fashion seemed also to be her means to stamp herself onto the world as a sexual being – an identity, Mia believed, nobody wanted to afford her. ‘I feel like I’m not expected to be attractive. People with disabilities say you should accept yourself as you are,’ Mia said.

Last year Mia had botox and breast augmentation surgery. Her natural breasts had the tubular shape typical of achondroplasia, which can stunt breast growth too. Mia thought this symptom had been overlooked by professionals, consistent with the perception of women with dwarfism as asexual. Despite her conviction (and, as I kept saying, mine too) that having that surgery was the right thing for her, she kept justifying her decision. ‘I didn’t feel womanly. I thought, how would I be with a man when I have dwarfism and I also have breasts that look like that? Like, c’mon give me a chance here! I shouldn’t be a martyr.’ Mia’s confidence in her new body was palpable in the ease with which she wore her revealing singlet.

In some ways, though, she was at a low point now, after her relationship with the other American man had ended recently. ‘I’m an ultimate romantic. My relationships define me in a way. Maybe put it down to low self-esteem, but knowing that someone finds me attractive lifts me all the way up and when it’s taken away, I crumble. I also want my dad to see me get married before he passes away, to see that despite everything that happened there are good people in the world ...’ Mia now hoped to meet an average-height man. ‘I don’t feel like I always have to date a little person. It’s about connecting with somebody. And when we’re out in public, we’re really at the centre of attention if there are two of us with dwarfism.’ She added, ‘Not to be rude, but I find that average-height guys are better looking.’

This last remark made me think of my own preference for good-looking men. It seemed even we, the imperfect ones, weren’t free from judgement on Body Surface matters. The Brisbane sun was ripening as the afternoon approached. We were reaching the end of our long conversation, and I still hadn’t worked out how to avoid letting Mia down in my writing about her. I felt drawn to her. On some very basic level she was my kind of person – intellectually and emotionally restless, someone unafraid of jumping into new waters be it a long-distance relationship or sunshine-yellow shoes. Her singularity was powerful, and the more time we spent together the easier it became for me to discard my fairytale-fuelled fancies. Yet, if I thought of our hours together as a symphony, then despite its richness one note dominated, possibly amplified in my ears by my worries about my youngest child: What is life when you’re so alone in a world with so many people around? I decided to come clean. ‘You’ve told me some tough stories,’ I said, ‘but I know this isn’t how you want your life to come across. What do you suggest I do?’ Mia considered my words carefully. Eventually she said, ‘I want you to write it the way you want to write it, but I don’t want to be pitied. That’s the one thing I can’t stand.’ I knew viscerally what she meant, even if our experiences of being imperfect were so different in other ways. I also knew that, by this point, pity was no longer what I felt. I felt another emotion, an emotion I was normally wary of – anger. Anger at what Mia had to cope with on a day-to-day basis.

Just before we finished, I asked Mia about her future plans. She said she was thinking of doing a PhD, and travelling again, maybe to Japan. ‘But really,’ she said with that honesty of hers I so liked, ‘I’d like to get married. I’ve seen the world, had a child, I have a career. But one thing that seems to come so easily to a lot of people, I haven’t had it. I haven’t even been on a proper date, something that’s not like, “Come to my house at 11pm so my roommates don’t see you,” all this degrading stuff. So even just going out on a date – a date with somebody who won’t be embarrassed about me and is interested in me as a person. I’d never be able to get rid of the fact that people treat me like someone with dwarfism. But ... I just want someone who will be like, “Oh, you’re so cool ...”’

This is an extract from Imperfect: How our bodies shape the people we become by Lee Kofman. Find Lee Kofman online at leekofman.com.au or on Twitter, Instagram, or Facebook.