"It’s rude to stare."
I bet most children hear this at some point in their early years because, in most cultures, staring is seen as rude. To be on the receiving end can make you feel uncomfortable and exposed, so good manners dictate that we keep our glances short.
Why does staring make us feel uncomfortable? It’s an incredibly intense form of communication; the eyes lock on someone or something, open wide and are unable to look away. We stare at a beautiful stranger across the room, we stare at a threat, we stare to intimidate. In mythology, Medusa’s stare was so powerful it could turn the onlooker to stone.
And yet, as a person with Apert syndrome, I sometimes feel that the memo about it being rude to stare must have been missed by a significant number of people. Even though Cranio-Facial medical professionals are always telling me that my son, Elijah, and I don’t look typically like someone with Apert syndrome, I am aware that we look different enough to attract stares.
Sometimes, when my psyche feels Teflon-coated, these stares bounce off but, at other times, they chip their way through and make me feel painfully self-conscious. Why is it that people feel it is OK to stare? How do you respond to people staring? These are questions I have wrestled with on and off throughout my life.
An airbrushed reality
There’s no getting away from the fact that society has a large part to play in how people respond to anyone that is perceived to be ‘different’, either because of how they look or how they behave (those with hidden disabilities are far from immune).
So many TV shows, films, magazines, adverts, and forms of media promote the idea that the only way we can have worth, be happy or loved is to look unblemished and to fit one definition of ‘perfect’ (although who decided what perfect looks like, I’m not sure). The current ideal of beauty is almost plastic in its airbrushed, doll-like proportions. We are a society obsessed with appearance.
I’ve been watching New Blood on BBC1 recently and was suddenly struck by the pleasant realisation that the cast look like the people I see in everyday life, characters of all shapes and sizes, their faces interesting because of quirky features or experience lines. But it seems to me that this programme is an exception, not the norm.
The mainstream media is far more comfortable with a one-size-fits-all concept of beauty and, sadly, somewhere along the line, the pervading message has become that conventional beauty is a measure of internal goodness, desirability or even ‘better-ness’. Although common-sense tells us that our physical appearance is simply a matter of genetics (or cosmetics/surgery), a staggering number of people buy into the myth.
What happened to choosing a person for their warm personality, infectious laugh, compassion, or shared values? These days it’s looks alone that will earn you a right ‘swipe’ on Tinder.
On display or hidden away
History has its part to play too. Less than 200 years ago, many people with disabilities spent their lives on display as entertainment for so-called ‘freak shows’. Paying members of the public were given free-reign to stare at the ‘Giants’, ‘Armless wonders’ and ‘Bearded ladies’. As an article in the Disability Studies Quarterly Journal stated, “The history of disabled people in the Western world is in part the history of being on display, of being visually conspicuous while being politically and socially erased”.
As medical knowledge grew and disabilities were identified, the audience became more ‘enlightened’ (to use the term loosely) and the freak shows fell from fashion. Confronted and uncomfortable with the knowledge that disability can affect anyone, society conspired to hide people with disabilities in hospitals and asylums, out of sight and out of mind. Yet again, disability was treated as something ‘other’.
Even today, at a time when large parts of society strive to be more inclusive, television programmes such as Embarrassing Bodies give us all a chance to stare at physical differences from the comfort of our own homes. Not so far removed from the freak shows of the past, we simply use modern technology to grant anonymity to the onlookers. We can feel curiosity, repulsion, smugness, and be completely unable to look away without having to justify our actions.
After all, is a stare still a stare if there’s no-one physically there to experience it?
Making sense of the unexpected
Of course, staring isn’t always intentionally rude or sinister. I read the following quote recently: "...staring, in its pure and simple essence, is the time required by the brain to make sense of the unexpected" by Jeanne McDermott, mother of Nathaniel, who was born with Apert syndrome, in FACES by Nancy Burson.
This is supported by a good deal of research that tells us staring is an important part of human survival and evolution, coming from a need to identify our own family or community from a distance or have time to respond to threats. As such, staring is actually believed to be less about judgement and more about understanding.
Back in 2012, a study at the University of South California asked participants to observe everyday actions being carried out by an able-bodied individual then a woman born without fully developed arms. What the study found is that when the observers saw able-bodied people carrying out the task, their brains were quiet because they already possessed knowledge and muscle memory of how the task would be completed. However, when they observed the woman using her residual limbs to complete the same action, the onlookers’ brains became highly active, lighting up areas of learning and empathy. When they watched a longer piece of footage of the woman, their brains soon returned to the quiet level associated with familiarity.
The researchers concluded that the more we can create inclusive services and support people with disabilities to be visible and active within their communities, the less noticeable their differences will become because they will no longer be unexpected.
So on a pragmatic level, I understand that – more often than not – seeing the unexpected is why people stare.
Thanks to the premature fusion of certain skull bones, Apert syndrome takes the ‘typical’ proportions of the human face and changes them just enough to be slightly unexpected, although it’s worth noting that Apert syndrome affects everyone differently.
There have been times in my life when I’ve been at peace with this, and other times when I have raged against it.
In my teens and early 20s, I was much feistier than I am now and would either shrug off or challenge stares with confidence. I would take my open, expressive personality, smile and use every stare as a chance to chat. Since becoming a mum - specifically a mum to a child with acute health problems and in need of round-the-clock care - I sometimes feel that I’ve lost my knack for socialising so stares weigh heavy on me at times. It feels worse in the current political climate where there seems to be less tolerance of minority groups of any sort.
How do I respond to stares? Honestly, I tend to stare back. That usually does the trick.
Although some people find it difficult, I love children and their direct approach. A child is much more likely to ask me questions about Apert syndrome and, once they have their answers, to treat me just the same as any other adult they meet. They understand that I have as much control over Apert syndrome as I do the colour of my eyes or the height I am..
I respect adults who are upfront enough to say, “Can I ask a bit more about your condition?” or a question along those lines, although hopefully they’ll introduce themselves and chat a bit first! It can be disheartening when people see the Apert syndrome before they see me as a person, but I’d rather answer questions than have someone stare from a distance or pretend I don’t exist.
Because that does happen. Before they talk to me, people sometimes make assumptions about my mental acuity and either talk down to me or talk across me. Sometimes they don’t want to look at me or talk to me at all.
I reason that behaviour like this doesn’t necessarily come from a bad place. People simply don’t know how to behave around those who look, talk, walk, see, think, hear or get around differently from the 'norm‘. They don’t want to cause offence by saying or doing the wrong thing so they either stare, look away or pretend they haven’t seen you. I might not like it, but I can understand it.
This understanding further fuels my belief that the more we can support people with disabilities and their friends and families through organisations such as Elijah’s Hope, the more we can educate others to see the person before their disability.
The look of love
One of the biggest questions I wrestle with at this stage in my life (I’m 48 years old) is whether I will ever find someone who will love me and chose to share their life with me. This isn’t something I often talk about openly because it’s deeply personal, but I think it’s something that many people with disabilities wrestle with and therefore it demands a conversation.
I am naturally a confident, expressive person, comfortable in my own skin. Four months ago, I joined Match.com with the hope of kick-starting my love life now that Elijah is home from hospital and life is more settled. My profile has been viewed but I haven’t received any messages. Although there could be other reasons why, I can’t help but question whether it’s because people only see the Apert syndrome, not me, Kaddy. Most dating apps demand snap judgements – a quick swipe left or right that could never encompass what makes each individual unique and worth getting to know.
The truth is that I want to settle down and have someone to be intimate with, someone to love who loves me for me. But will Apert syndrome be a barrier to meeting that person? Would a potential partner be embarrassed for me to meet their friends and family because of how this condition has shaped my face or hands? And, actually, would they be worthy of my love if they felt this way?
But where does that leave me? Do I continue to go on dating sites and proactively look for a potential partner or do I trust that the right person is out there and our paths will cross when they’re meant to?
As you can see, I have a lot of questions but no easy answers.
While this is my reality right now, I know that everyone has different realities. Some of you reading this blog may have had similar thoughts and experiences, while my feelings may be completely alien to your own reality. I tend to have a positive outlook on life and I think a positive aspect of these thoughts is that I’m choosing to express and share what I’m feeling.
All I know is that I will continue to live life to the full and to empower people with disabilities and their families to do the same. When someone glare-stares (you know the look I mean!), I will stare back. I will strike up conversations and educate the people I meet to look beyond a disability to the person. I will state my feelings now because none of us know what tomorrow will bring. I will look for love, but understand that love starts from within.
And, who knows, maybe one day soon someone special will come into my life and stare at me across a crowded room for all the right reasons.
If you have a condition or injury that has affected your appearance in any way, support is available through the fantastic Changing Faces organisation.
If you or a loved one have Apert syndrome, you can access support, advice, information and an active community through Elijah’s Hope.
You can also join our international, multilingual community for Apert syndrome on RareConnect