FEATURE: "My triplet has leukaemia. And there's one word I want to eliminate for him."

I am a triplet with two amazing brothers, and we are 23.

One of my brothers Pierce, is terminally ill with a diagnosis of an aggressive acute lymphoblastic leukaemia. He underwent chemotherapy, which proved to be unsuccessful, so he was given the only other viable option of immunotherapy, which ‘masks’ the leukaemia and essentially helps us gain time with him. It is basically still an experimental drug and in very limited supply due to cost and high demand. Pierce also has Down syndrome, bipolar and autism. While my family experience the most difficult time of our lives coming to terms with Pierce’s prognosis and accepting a bleak future, I have found myself spending a lot of time thinking about all the things I’d like to do for him.

Creating awareness about the impact a particular word has on ours, and many people’s lives is high on my bucket list.

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We all know the R-word, don’t we?

It’s a little bit like the F-word but it differs in that it’s arguably more offensive, degrading, and, much like the thought of Donald Trump leading a country, it personally leaves me feeling more than a little uneasy. You might genuinely not know which word I’m talking about. Perhaps the word you’re thinking of doesn’t seem insulting. Perhaps you’re thinking you’d like to stop reading now, because you know which word I’m talking about and feel that I’m just being a little sensitive. Or, perhaps you use it in your everyday vocabulary and don’t see what the fuss is about?

In any case, if you haven’t already nutted it out, I’m talking about the word ‘retard’.

Lots of people have different views about this word.

Here’s mine – from someone who is affected by this word and not because I’m ‘soft’, but because my lived experiences with this word are negative and hurtful, as it is for so many others. I like to think of the etymology of the word ‘retard’ a little like a game of UNO. For starters, its use is most popular amongst 8-16 year old children. However, adults will sometimes join in, often out of boredom, and it can end in tears. There are variations, but the underlying goal is the same. Overall, it becomes progressively tiresome, and no one usually ends up winning.

Dating back as far as the 1400’s, the word ‘retard’ derived from the Latin word ‘retardare’ meaning to hinder or make slow.

Listen to Vanessa Cranfield’s raw description of raising Gretel, her daughter who has Down syndrome, on No Filter. Post continues after audio. 

In 1704 the word was first printed in an American newspaper from a scientific perspective, but it wasn’t until the 1960s when the word was first used to label people who were intellectually disabled. The ambition was to re-label individuals as ‘mentally retarded’, rather than to use what were considered to be, at the time, ‘out-dated’ terms such as imbecile or moron. The word became abbreviated, as many similar terms have, from an adjective to a noun in common use.

It wasn’t until more recently – in fact, only 33 years ago today – when it became somewhat socially acceptable for the word to be used as a reference for people who were intellectually or even physically disabled.

The word soon rapidly became a term of derision, when it was frequently interchanged with words such as idiot or stupid.

Particular media and representative groups have rallied to outlaw this word altogether, but it is still regularly used by many, worldwide, and people I know personally, today.

It has taken me much of my twenty-three years to gain the courage to confess my loathing of the ‘R-word’, but still not to anyone directly. I first used the word ‘retard’ many, many years ago, when I was listening to the Black Eyed Peas track “let’s get it started” and I remember explaining to Mum how there were two versions, with the second substituting “let’s get retarded”. I was advised very quickly by Mum to listen to version one and encouraged not to use this word, and without really understanding why, I never used that word again. Simple.

When we were quite young, a bully saw our brother hopping off what was commonly referred to as the ‘nuffy’ bus. He smirked and told Healy and I he had seen our ‘retarded’ brother. At the time I didn’t know what he meant by this. Healy later explained to me when we got home and we both cried, devastated at the thought someone would make fun of him when he’d never done anything wrong. With this confronting experience at quite an early age, we soon realised what we were all in for, particularly when growing up in a small country town.

Since those early days, I accepted it as okay for strangers, close friends, distant family members and even partners to use this word around me – peculiarly, when they all knew that I had a very close brother of mine with multiple disabilities. I used to think I’d just let it go because I believed it wasn’t up to me to tell people what they should or shouldn’t say.

It is always extremely difficult to confront anybody – especially friends – in this way.

This may be the very reason this R-word is still around in this day and age. It is perhaps only when some insulting words become illegal or politically incorrect, that things may change. It was always a letdown for me when I’d hear friends choose to use this word as part of their everyday vocabulary. I seldom find people I know quite well, who don’t use the R-word. When I actually come across these ‘non-users’, I find it a very attractive quality in them. It would be silly to eliminate all the people who say the R-word from my life – because it may just be a case of enlightenment to perhaps change their thoughts a little, and they are all generally of good will.

But where do we draw the line?

Over the last four years, I completed a course which partly specializes in tending and assisting people with disabilities, yet on numerous occasions I was surprised and disappointed to find various students using the R-word, both in context of a speech pathology scenario, and out of context when talking about things that they disagreed with, such as “our timetable is retarded” or “it’s retarded they have put our lecture on that day”. I often wonder what they think or feel when they hear or say the R-word.

Nothing?

I hope at some stage after some ‘enlightenment’, that there would be some thought given to the fact that this word will offend many people they work with throughout their career, unless that compassion simply is not there?

I’ve always assumed it was common knowledge not to use the R-word in public, and especially not in front of someone who would potentially take offence. Quite often, the response of those using the word, when confronted, is that they don’t mean it in a ‘disabled way’ – they mean it in a “messed up” “stupid” “dumb” or “not working” way.

READ: COVER STORY: A child in an adult's body. When children with a disability grow up.

Does this not blatantly confirm the destructive evolution of this word? How can people still not see its potential to cause pain? I think, regardless of which context the word is used in; its underlying meaning remains the same. It encourages the notion that cognitively impaired people are stupid or unwanted. I think I can confidently speak for all affected by this word, when I say that it hurts.

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Coping with death is not easy in any respect.

It’s no competition. All deaths are difficult in their own way. I struggle at the thought of spending our birthdays without our third. I struggle at the thought that my constant crying and state of grief is not justified, or that people think it’s “easier” because Pierce does not fully understand what is happening to him. Or even the fact that to some, he still might be considered ‘less of a person’. In addition to fighting for his own life, Pierce, among many, is fighting for respect in everyday life outside of cancer. There are countless ways to describe Pierce and the life we have shared with him. Inspirational, unique, positive, challenging, persistent…

What Pierce has shared with us is anything but “retarded”.

This post originally appeared on R Word Unheard and has been republished with full permission.