05 November 2015

The pitfalls of homogenising disability appearance

I've got a few doppelgängers. They span generations - some are 20, 30 years older than me, and others are toddlers. Genetic similarities thread through strangers across the world, giving us a sense of knowing and belonging, even though we might not know each other.

We all bear a strong resemblance because of a severe skin condition called Ichthyosis. It's equally intriguing and comforting for us, and confusing for others.

I was at a party recently, catching up with old friends and making new friends. One friend introduced me to her friend, whose eyes immediately lit up when she saw me. She recognised me. Due to my red face, I'm easily remembered, and sometimes (now more frequently) recognised because of my writing. It is quite exciting! She told me she'd seen me on a friend's Facebook that week, and was adamant I'd been in Brisbane. I hadn't - though I was on the Gold Coast at the time. She finally found her friend's photo - her friend was indeed with a female with a red face. But it wasn't me. Her friend had met my nine year old friend Lucia, who also has Ichthyosis (the same variation as me).

I got a little frustrated and told her that I know she didn't mean harm, but I think there can a problem with people without disabilities seeing one person with a disability or facial difference and thinking they've seen them all. Media portrayal of disabilities seem to make people experts! She understood where I came from and apologised. I also told her that my little friend is nine, and I am 33! (My beauty regime of paraffin and natural facial peels leaves me looking super youthful!) And of course this conversation inspired me to explore the topic more, and so here I am.

I encounter being mistaken for others with Ichthyosis a lot. It's a rare condition (20 per million), and patients with the Nethertons Syndrome (mine and Lucia's type) and Harlequin types do look very similar. Sometimes people stop me to tell me they've seen me on TV - and I smile and say I was on Channel 31's No Limits for three seasons - very pleased someone has actually tuned in! No, they correct me. They've seen me on Embarrassing Bodies or Medical Incredible. That's not me, I tell them. But yes, they've seen me and my sister, and how much I scrub my skin. And they ask me when I moved to Australia, because the show's subjects are English?. And I tell them again, that's not me - I'm an only child and am Australian. They shrug and tell me they know so much more about Ichthyosis thanks to these shows, and I tell them I would never appear on a show like Embarrassing Bodies "But you look just like them", they continue. Yes. Yes I do.

Professor Ingrid Winship, Professor of Adult Clinical Genetics, University of Melbourne and Royal Melbourne Hospital tells me the reason patients with genetic conditions look similar is a complex one.

"The DNA instructions that cause the health issues may also have an influence on the development of our facial structures. We are able to recognise faces from an early age, and it is possible that the relationship of facial features ie how widely spaced one's eyes are or the shape of the chin, which people with some genetic conditions have in common, that create a "pattern" which is easily recognised", Ingrid says.

My new friend from the party can easily be forgiven for mistaking two people with Ichthyosis. There is a genetic explanation that has taught me not to be so defensive when encountering these doppelgänger questions.

"A child with Harlequin Ichthyosis, for example, may look more like another child with Harlequin Ichthyosis than their own sibling", Professor Winship continues.

When I've met others with Ichthyosis, I've been struck by how alike we look, and how different I look to my parents (despite Professor Winship telling me I look a lot like my Mum). It's like looking into a mirror, despite any age difference. We have similar face structures and hairlines, a slight build, and I've been told our pinky fingers and toenails are curled. It's like we are one family. Parents of children affected by the condition tell me about the cute instances of their child seeing another child and thinking it's them. It must be such a relief for them to see others like them out there. It has been a relief for me. It was amazing to see a room of similar faces at the Australian Ichthyosis meet earlier this year.

Professor Winship says "Being a bit technical, there is a genetic effect recognized called pleiotropy- that a change in one single gene can cause multiple effects on the body's health and appearance. This is seen in Marfan Syndrome, where the eye, the heart and the skeleton may all be affected by a single genetic change."

Prue Hawkins, who was a close friend of the late Stella Young, has often been mistaken for Stella. They have the same disability, both had a nose and lip ring, and they shared the love of knitting and dancing.

I asked Prue why she thinks the confusion happens. "I think people see the wheelchair, then a small female in it and just assume we are the same person. Even though for years I had long blonde hair and hers was short and a variety of colours", she tells me.

Prue also relates to my "seen one, seen 'em all" theory.

"Stella and I used to joke that there could only be one crip in the village (circa only one gay in the village from Little Britain)", Prue says. "If you look at photos of us together, we really look nothing a like. But again, people see the wheels and assume we are the same person.

"It started as a joke between Stell and I, but in the end got so frustrating. Because heaven forbid there be not one, but two balshy, powerful and capable women in this world who were willing to "stand up" for what they believed in (pun intended)."

I first came to know of Prue when she appeared on SBS Insight, discussing issues around disability and employment, and a fellow guest mistook her for Stella. It was amusing, but also detracted from an important issue, and raised another - the perceived homogenisation of disability appearance.

The Insight guest couldn't get past Prue's resemblance to Stella to address her by her correct name.

"I was mainly embarrassed for him if I'm honest. He said he was so excited to be meeting Stella, and I kinda felt bad for him that I wasn't her. I think he was so nervous about being on TV, so I just let it go. I didn't actually correct him, Jenny Brockie (the host) did".

Prue believes the idea of "only one crip in the village" can be reduced through increased exposure of people with disabilities. "The more PWDs are out there, in the community and living a normal life (whatever normal is), the less of a novelty act we will become."

There is still and surprise and inexperience in talking to people with disabilities, and being mistaken for someone else is tiring. But the genetic explanation helps me understand why this is a common occurrence. Our brains are wired to recognise similar characteristics - genetic patterns. And while I (and Prue and many others) think it's important to take a few moments to think before you speak to disabled people, taking a step back from the personal experience has made me realise what an interesting phenomenon this similarity of appearance is. I can't speak for others with Ichthyosis, but I think it's pretty amazing I have a whole 'family' out there who truly shares some of my experiences of what it's like to look different.

This article first appeared on Daily Life. I loved writing it, and my editor Candice gave me wonderful feedback, which encouraged me to explore more complex themes in my writing.

"What a TREAT to finish the week with your piece. As you know I'm a big fan of your writing but this is definitely one of my favourites. It's SO interesting, heartfelt, and well researched. I really liked the way you told it -- and the reflection of having "a family out there who share your experience of what it's like to look different". What a wonderfully powerful note to end on."



  1. Great post Carly - although I agree that you DO look like your mum from the photos I have seen of both of you. I think it's a human tendency to focus on a characteristic that is different from what a person might be used to and then not be able to see beyond that. I think it happens to people with different ethnic backgrounds as well.

  2. Oh yes yes yes. I'm continually mistaken for other disabled people. With my best friend I can understand it - you rarely see one of us without the other. But other than that…no! There's a lady in my town who continually mistakes me for the OTHER girl with CP in town, even though I'm white and have short straight dirty blonde hair and she's Ethiopian and has long curly black hair.

  3. I am one of "the two Denises" where I live. There is another Denise - also a power wheelchair user, also with brown hair and glasses, and also a disability advocate. We get confused for each other all the time. We are friends and laugh it off, because we have to otherwise we'd be frustrated all the time.

  4. Oh, cheers! Yes. In my house it is down syndrome and the cliches one hears are gag-worthy. But we, too, find a balance between opportunity to educate (when it seems appropriate) and just living life being fabulous and waiting for the world to catch up with us. My ah-ha moment came when Ms20 was around 4 and I stopped being in denial about the whole down syndrome thing and went to my first support group Christmas party. First thing I noticed when I walked in the room of at least 30 families was... I could instantly tell which kid with DS belonged to which family. Sure, there are physical characteristics that individuals with DS have in common but every.single.kid looked much more like their siblings and parents than like each other. Shocker I know :)

    Ms20 still gets mistaken for a friend of hers in the next village who has same hair colour but that's about it. But most of the time it's what I classify as a "friendly mistake" and people are looking to engage Ms20 rather than to single her out. Make sense?

    Vive l'difference!

  5. I know many autistic people. There is no way someone would mistake me (the choleric among phlegmatics) without some baseless and irrational assumption parasitizing their common sense.


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