18 August 2014

Feeling like a freak on the opposite ends of the spectrum

I've felt like a freak on opposite ends of the spectrum - by strangers, and by people I expect to care for me. I define the meaning of freak - based on my own experience - to be stared at, unwillingly on display for others to gawk and laugh at. I've also felt like a freak in the world of medical voyeurism.

I always feel like I'm in the strangers' gaze. They look at me, turn their heads, wondering what they just saw. They stop, mid conversation, forgetting what they were saying and their mouths wobble, like deflated bicycle inner tubes. I notice the upnods - look over there, look at her, the sniggers, the whispers and the blatant oh my gods. I've learnt not to notice it as much, but when I do, it still gets to me.

Adam, my fiancé, says he's noticed how much strangers stare at the different since being with me. He said he notices people's faces, they say "she looks weird" without verbally saying it. He doesn't tell me when he hears people whisper, but I can tell as his grasp on my hand gets tighter and he steers me away from the ignorant. Walking with him is like seeing stares through others' eyes.

Mum tells me people have gawked at me since I was a baby. I was born in a small regional city - and I imagine back in 1982 it was safe to leave your baby with a stranger while you ducked into a shop. I was - and still am - high maintenance. One day when I was a few months old, mum had to duck into the chemist to get some cream for me. Because it was hot/I was crying/sore/high maintenance/she was very trusting, she didn't want to take me into the chemist, so she left me with a stranger across the road. She told me that when she returned to me in the pram, a group of strangers were peering into the pram, looking at this red baby. Til then, they'd never seen anything like it.

And so it continues, all through my life.

Once, a man brought his whole family to a window, to see me eating inside a restaurant. They stared at me from the outside - faces pressed to the window like I was inside a glass cage at the zoo.

Teens have photographed me on a train, holding their phones up above their heads, hoping to catch me in the lens. They sniggered amongst themselves, probably texting them to their friends, until me and an onlooker saw them and said something.

One night I was walking to a restaurant on the south side of the river, a suburb I rarely visit. It was a Friday night in mid spring, and there were groups of friends enjoying drinks before dinner on the pavement. A group of men had a dog at their table - not a friendly welcoming dog, but one that barked and snarled as I walked on by. "Good on you", a man praised the dog. "Bitch deserves to be snarled at", he said.

When I finally got to the restaurant I didn't tell anyone there. Who could relate? It was far from a wolf whistle. But it was just as degrading. With comments like that, I long for a wolf whistle.

Most recently, my photo was misused in a voyeuristic online forum where my appearance was ridiculed, diagnosed and threatened by hundreds of strangers. It felt like I was no longer in control of my image - something that I've been proud of achieving through blogging.

I want to take you to the other side of the spectrum. I used to go to massive medical conferences. I was a patient. A teaching example. An exhibit. Doctors would sell the conferences as a means of research, so one day there might be a cure for my condition. My parents, understandably in search of a cure, gave up our time to attend these conferences. They were no buffet lunch at the Hilton with sample bags type conferences. Well at least not for the patients. They were held in a hospital, sometimes in a large conference room partitioned by makeshift cubicles, and sometimes in consulting rooms. They were really just training days for the doctors with very poor bedside manner to make clinical diagnoses.

It was like we came to life from the textbook pages - dermatological specimens, labeled by our conditions, never by our names. Also, I've been snapped by medical photographers - my face is probably blacked out in a textbook somewhere, my body scaly and self conscious. All for research.

The conferences started off being a novelty - I could get away with being cute as a little kid, charging the doctors money for a look. But as I got older, more conscious of my pubescent developing body, and longing to be treated well by everyone I encountered - because doctors are professionals and this wasn't the schoolyard - it became overwhelming. The conferences welcomed international doctors, many of them didn't interact with patients directly, many of them didn't interact in English. They communicated with points and pokes and nervous laughs.

My body is constantly in a state of temperature confusion, so it was uncomfortable. I was on display. I was able to wear undies, a blanket and one sock. Cold hands touched my body and pulled at my hair and conferred amongst themselves. Cold voices, and laughter if they couldn't understand my English.

The last conference I went to was over half a lifetime ago. I will never go back. I contribute to research in other ways. I take control of how my body and medical condition is viewed.

The word freak has negative connotations. Because I've felt like a freak in a strangers gaze. I'm rarely looked at for my beauty or even intelligence or persona out in this context. And the synonyms for freak make me uncomfortable.

We're not Freaks. Spastics. Retards. Derps. Special.

We're not the words that you spit out in disgust.

They're all words I hate. Labels. Some people choose to embrace them, but I choose to leave them out of my life.

We're not here for your entertainment,

For your eyes to be glued to your screens watching reality TV.

Or for your fingers to type out words of mockery on the World Wide Web.

And nor are we specimens, zoo animals, science experiments.

We're rare, we're different looking, we're medical marvels, but we deserve more than this.



  1. I remember watching a documentary on Michael Jackson where he was interviewed and he talked about one time in an airport how people were laughing at his acne. Suddenly the mask wearing and covering the kids up all made perfect sense to me.

    I'm sorry this happens to you. I think you are amazing.

    I also want to say, if you were not there, then they would be laughing at the fat person, or the person with the odd hairstyle, or anyone who is "different".

    I know, because I have been all 3 at various times.

    Sometimes I just want to go and live in a cave and avoid humans because for the most part, probably 75% of them, they are just nasty bullies. :(

  2. Carly....
    Beauty--I think--comes in twain different forms. Sure. There is physical outer beauty. Which you definitely have!! But then again. There is such a thing as inner beauty, as well. Which you also definitely have!! But it feels as though I am preaching to myself here. See, I was born with a birth defect called craniosynostosis. Translation. I was born sans any soft spots and needed Dr. J. to cut my skull open {Twice!!} so he could reconstruct it. {And meanwhile save my Life!!} I have twain surgically-created scars as proof!! Now? I am thirty years old, and was diagnosed last year with folliculitis decalvans. As resulted, I am slowly losing my hair. Thus far, I have twain bald spots. So, I totally needed to read this Blog post!! Because as of right now I am gradually learning self-acceptance in the fact that after my beautiful hair falls out, I will look like a bald-headed freak with twain Frankenstein-like "Cranio" scars.... ;)
    Love you later, Raelyn
    P.S. I am sorry that people can be so disrespectful, rude and inconsiderate!! :-(

  3. That douche with the dog! How awful!

  4. Carly, this post made me very sad and very angry.The story of your treatment at medical conferences - awful. I've seen lots of surgeons and docs over the years with my back problems, and I've had a lot of experiences with poor bedside manner, so I can just imagine how objectified you felt - and were. You are such a valuable, creative and interesting person. It's a sacrifice for you, and a win for society, that you have had these experiences so that you can process and explain them to others, making a positive difference to the world. I feel mad for you. All the best, Rach

  5. i love everything you write! and love the way you transform ignorance and cruelty in knowledge and respect. I feel like a "freak" sometimes, but every time i read you it´s clear to me that our dream of a inclusive society is becoming true.

  6. People are jerks. Unbelievable. From what I've been able to glean of your personality through reading your blog, you carry yourself with more grace than most people could ever hope to imagine.

  7. I am sorry you have had to deal with this, Carly. I often wonder how we are moved from 'people' to 'object' simply by difference. How once that happens it becomes okay to be so horrid as if we are no longer entitled to expect respect and decency. I particularly resent it in medical circles where they technically should know better but are so desensitised to the person in the patient before them, that you lose the right to be treated with dignity. I think as you say those moments hurt so much when you've tried so hard to own your story your life. Glad you have Adam to hold your hand and protect you from the a'holes in the world. xx

  8. I'm so sorry you've had this experience. One time when I was a teenager I dyed my hair bright pink. When I was walking down the street some pricks yelled out to my boyfriend "mate, your girlfriend looks like a Freak!". I felt gutted, absolutely gutted. Why are people so fucked. You are a total legend for putting up with all these total fuckwits. You owe them nothing, even if they have some kind of ridiculous sense that everyone should look a certain way or they are obviously asking to be insulted or commented on. And also so glad Adam is there beside you giving the metaphorical finger to the ignorant.

  9. Ergh. Gee Carly, this makes me feel sick. Of course I assume that there are rude people out there who make comments about people that look different but I really didn't think it was this bad. I don't think I've really seen discrimination like this. I hope I haven't and just not noticed.
    Well done you for turning the stares around. Now it is just as likely people might look twice because they recognise you from your appearances on TV and speaking appointments.

  10. Oh Carly, this brought tears to my eyes. You are very talented at translating what so many feel into words. Thank you for being so articulate and so frank. Please know for every person who stares and points and whispers, there is another who stands with you.

  11. I hope I am not being rude, I see a beautiful young lady in the pics you share. I want to educate myself further on your condition. I am sorry that you have experienced such an ugly side of our current sociatial state, I hope that you have also experienced that some are not so terrible that some are loving and excepting of our differences. My wish for you is love and peace!


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