Deformed Normality
By: Nikita Montlake
Tags: Diversity, Cleft Lip, Normal, Media Criticism, Deformity

Deformed Normality

There is something about the word ‘Deformity’ that makes me recoil slightly… it feels wrong and shameful, yet being born with a birth deformity is the one part of me I am most proud of. Recently I have become acutely aware of how deformities and physical impairments have been depicted in the media and I feel myself starting to question those depictions and the conversations around them. Inevitably, they always circle back to this societal expectation of needing to be ‘normal’.

So what does ‘normal’ even look like?

Considering that humans love their comforts, we have developed into a society where it falls on the individual to fit in rather than society shifting to allow them in — let alone embrace them.

Across societies, a standard has been set for what is considered ‘normal’. This then gives way for interpretations of ‘abnormal’ or ‘deviant’ due to our developed need to categorise all individuals. Those categories are made up of attributes we consider to be ordinary and natural so that we know how to tolerate one another. In essence, ‘normal’ is a place of comfort and any deviation forces one to reconsider how you would interact with ‘the other’.

The year 2020 feels like a turning point in history where many people have started to question and challenge the status-quo. So let’s take this opportunity to review how those of us with deformities are being depicted and start to challenge what is considered ‘normal’.

Currently Deformity seems to be yet another taboo topic. The child is born and the doctors fix them. If they can’t be fixed to the point of passing as ‘normal’, they conceal their deformity as best as they can. In the UK, 1 in every 49 babies has a condition relevant to the National Congenital Anomaly and Rare Disease Registration Service (NCARDRS). Millions self-identify as having a visible difference and most of whom experience isolation, discrimination and hostility.

This needs to change, but how?

The journey into unpacking the discomfort around deformities felt daunting, so I started by simply asked myself: where am I seeing myself reflected in the world? Coverage in the media always seems like the best place to assess how certain lived experiences are being viewed by society. So let’s see how the media is depicting me.

Starting with Advertising:

If wrinkles are still not ok then scars are definitely not ok. The Body Positivity movement alongside the Disability movement have been doing wonders for the general ‘be comfortable with who you are’ cause. On TV I am seeing more curvy people, more stretch marks and even the odd person in a wheelchair (still not enough but there is a start).

Yet the beauty industry is still pushing for the removal of scars, blemishes and any form of disfigurement. The language used is around how you can’t feel your best until you look your best which is only achievable by removing what is wrong with you. So what I am getting out of that is; despite my scars being an integral part of what makes me me, they need to go.

Moving on to Movies:

Off the top of my head, the movies that come to mind involving characters with deformities are; Freddie Krueger in Nightmare on Elm Street, The Phantom in The Phantom of The Opera, and the countless James Bond villains. I am detecting a pattern here… we always seem to be the deranged bad guy. Even in The Dark Knight — Harvey Dent’s transition from good to evil is characterised by deformity.

The Phantom of The Opera is one of my all time favourite movies. The most profound trigger moment for me is when Raoul is pleading for his life and asking The Phantom to show some compassion, to which The Phantom replies “The world showed no compassion to me!” That one line breaks my heart every time. The only reason he became so cruel was because cruelty was the only treatment he knew purely because of his deformity. He should not take the blame for that.

The only film I have seen that attempts to positively address deformity is Wonder — a ‘feel-good’ family film about a boy with a craniofacial condition called Treacher Collins Syndrome. The story is told from the perspectives of different family members so you really get an understanding of the affect a child with a birth deformity has on the whole family — but speaking as that child, it drastically underplays our real lived experience. But at least it was something for my mother to relate to.

I then found myself googling ‘celebrities with deformities’ and got a number of article with titles like ‘Celebrities with Shocking Physical Deformities’ to which most of them consisted of third nipples or two coloured eyeballs. Not really what I would class as shocking deformities, but at least I now understand where the bar is set.

Joaquin Phoenix with his micro cleft did, however, get me excited when I first saw him in Walk The Line. Having a cleft myself, I believed he was going to be my saving grace, but that excitement soon turned to disappointment when I realised he could never become a source of reassurance — his refusal to ever publicly engage with having a cleft saw to that. Now when I think of Joaquin Phoenix and his micro cleft, all I see is that American talkshow host, Wendy Williams, lifting up her top lip to mock him in the most grotesque way. That one hit me hard.

Speaking of television, let’s now turn to TV Shows:

There are A LOT of reality TV programs about cosmetic surgery. Before I go any further, I do need to say that I am all for cosmetic surgery. For many people with deformities it may take a number of surgical procedures to get to a comfortable way of life. If I didn’t have my multiple surgeries I would not be able to eat, breath or talk properly. So surgery is necessary — but is it all necessary? Even a few of my own surgeries were purely for cosmetic reasons, yet they still felt like something I needed to go through to become ‘normal’.

What we currently consider to be ‘normal’ is starting to feel very limited.

The most recent TV series I watched is Skin Decision: Before and After on Netflix. It is essential an extreme makeover type show for people with various skin and physical differences which are hindering their self image and other aspects of their life. In the opening montage sequence there is an audio clip from one of the participants which states: “I felt deformed and now I feel human”. I was quite taken aback by this comment. Does having a deformity make me less human? I do not blame the woman for saying that because she was only speaking from her lived experience, but I do question the director or whoever made the conscious decision to use that line as a hook for the series. It’s doubtful they would have consider how that may come across to people with visible deformities — many of whom cannot afford the treatments on offer in this program.

I always feel queasy when watching or talking about surgical procedures and when visiting hospitals. I think it’s because it brings back all that trauma. One of my sinus and lip surgeries entailed removing my rib to get more cartilage to straighten my nose. It wasn’t just the pain that made me pass out from nausea but also what I saw in the mirror when I woke up from that surgery. My face reminded me of the grotesque illustration of the pig in Animal Farm from my school set-work book. I couldn’t understand how anyone could bare to look at me — I definitely couldn’t. It made me feel sick. This was trauma that occurred on top of the initial trauma of dealing with a cleft. Surely there must be another way to address this pursuit of normality that does not include medical intervention or me being told I need to be ‘fixed’?

Me at 2 days old — just after my first surgery

Although programs like Skin Decision are transformative for the individual, they do not tackle the greater issue of intolerance of people who do not look ‘normal’. All I am seeing is a lot of doctors making a lot of money off people’s pain. Those people are putting themselves through more trauma and having to resort to expensive procedures to gain their dignity. As far as I am concerned, dignity is a basic human right.

What we are seeing in the media is a combination of needing to remove our scars, hide our deformities or be feared because of our abnormalities. Only after watching the documentary, Disclosure, did I realise this does not need to be the case. Within it Yance Ford says: “I cannot be in the world until I see I am in the world”.

Now that the status-quo is being challenged, there needs to be a shift in consciousness too. Society needs to be embracing scars and disfigurement as part of this movement towards expanding our capacity of acceptance. Normal is not what we are told is normal but it is merely what each individual is exposed to. So let’s start to broaden that exposure and reshape ‘normal’.