What is normal?

People stare. It’s a fact. And growing up with a disabled older brother, I grew very accustomed to it.

To a certain degree, it can be forgiven. Staring is actually part of how our brains process things.

For example, if you’re walking down a busy street most people look fairly ‘normal’. Your brain is used to this so it doesn’t make note of these faces as anything worth remembering. However, if you saw someone with Down’s Syndrome, or a person without a limb, your brain doesn’t have the usual reference points to go to, so sends an alert to your eyes to look a little longer in order for you to map out what it is you’re seeing.

I like the idea that there’s no such thing as ‘normal’, yet when it comes to our brains it’s a lot less diplomatic. Mass is normal, anything else isn’t.

I grew up with an older brother in the ‘anything else’ camp. He has Autism, plus a raft of other complications. It has always been common for some people to take a second glance, but because I was born into this it was my normal.

When I try and explain to people what the deal is with Blair I default to something along the lines of: “picture everything a three year old can do for themselves except in a thirty year old’s body. Then add epilepsy and an ability to recite every single Thomas the Tank Engine script by heart all day. That’s the general gist”.

All the stress, tension, challenges, hilarity, despair and experience that comes with this package has always been my normal. Or at least until recently.

For the past two years I’ve been living overseas and for the first time ever I’ve had a new normal; one that is probably a lot more in line with everyone else’s.

When I planned a trip to come home, given how long it had been, I knew some things would feel different. However, one of the things that took me the most by surprise was how foreign my family set up seemed, and how it had taken me leaving and coming back to really understand the resilience of my parents.

In the two years I’ve been away building a new life in London, my old one has been ticking along in parallel. In that time my parents’ routine on a day to day basis has stayed almost identical; their normal means they don’t have a choice.

Every day Blair requires medication to reduce the risk of a seizure, but because he can’t swallow pills three times a day these are ground up, mixed with yoghurt and spoon fed to him. He can’t shave or get dressed on his own, so this is also done for him. And last night I was helping get his dinner ready and Mum asked me to peel and dice a nectarine. Have you ever peeled a nectarine? Of course not. Its skin is immeasurably thin. But it has to be done so he doesn’t choke. All these rituals, every day, had fallen out of my normal.

There are plenty of funny parts too, though. Every now and then Blair will form a slight infatuation with a random object, most recently a packet of crisps, which he won’t part with. This means Mum and Dad will sometimes need to tuck him in at night with a jumbo packet to avoid a tantrum.

Coming back home and seeing it all again, plus suddenly having this new life overseas to compare it with, has been eye opening. It has taken appreciation to a whole other level, not to mention a redefinition of perseverance and patience.

It also made me think we could all do with expanding our individual definitions of normal.

Awkwardness and discrimination are constructs we as a society control, and they tend to grow from what we define as the norm, or what we are used to.

Often people’s reaction when I tell them about Blair is “I’m so sorry”, but it’s not really a ‘sorry’ thing. It’s not any kind of ‘thing’ really, it’s just my normal, and I’m sure if I asked my parents they’d say the same thing.

There is disability all around us. In both New Zealand and the U.K. we are lucky to be in societies where it isn’t kept behind closed doors. Which is one step toward recalibrating a shared sense of normal.

Next time you catch yourself staring at someone who looks a little funny, forgive yourself the stare – but remember to look.

Look at that person and remember they simply got dealt a harder hand than you. Their situation is their normal. But even if it’s just a smile, finding some way of showing you’re accepting them into your version of normal too can start to break down some of the barriers we create.

While you’re looking, cast your gaze to their left or right too. In some instances you may spot a mum, a dad, a sibling or a minder. And I can tell you straight, that person has greater patience and determination than most people could hope to achieve in a lifetime.

And the same thing goes. What you’re observing is their normal. The greatest thing you can do is to act in a way that treats the situation as part of your own too.