We have all heard the saying: “Sticks and stones may break our bones but words may never hurt us”, but I think that saying is a little outdated. 

As a woman with a disability, I am resilient and can handle a little political incorrectness when it comes to words but words truly can hurt. While I care more about the person’s attitude behind the words there are still many times I don’t know how to respond when people throw some words around. 

Here are just a few words thrown around the disability community and my thoughts on them:

Special: I HATE this word with a passion. Often when something is referred to as special the truth of the matter it is not that special anyway. It is a word that makes me cringe, as often it is an excuse to water down help that may be required due to a disability. There is nothing special about special schools or special programs designed for special people. It makes me gag every time I hear this word. Supermarkets have specials every week (normally it is the same Coke, cereal or chocolate bars). It is a discounted product or reduced-price item that is overstocked or nearing being out of date.  I am a human being but if I were a supermarket item I would be a full-price baby and a limited edition (one of one). I would NEVER be a special. Let's not reference people with disability as special. There are many things I am good at but also many things I suck at.   To be honest there is nothing special about me, or my disability, nothing at all. 

Inclusion:  This seems to be the word of the moment and yet we have far to go in this space. I long for an inclusive world, where regardless of one's ability you are given the same opportunities and access to them as anyone else. Many people mistake the true meaning of what inclusion is and this confuses many people outside of our community as to how to best implement true inclusion. My definition of inclusion is simply being provided with whatever it is required to do the EXACT same things as anyone else without a disability in whatever community you desire. You can’t include someone yet separate them from their peers. Segregated events set up purely for a certain demographic of people will never be included. Inclusion is equality and equality is never achieved by being separated and placed away from others. There are many disability settings, still operating on a segregated model, that have bastardized the term inclusion and this frustrates the hell out of me. Ironically the word inclusion is rarely used apart from when people are fighting for that very right, to be included.

Carer:   Another gag word for me. When I am out and about so many people refer to people that are with me as carers. Why? Well, the obvious answer to that is these people assume due to my needs that people are paid to be in my life. My main “carer” and I just say we are brother and sister.  By doing this it cuts out a lot of the preconceived ideas people may have on the roles people play in my life. I am blessed my mate feels just as uneasy about this as I do. Depending on the crowd my “Brother” when asked if he is my carer responds,  “Carer…. Nah not me to be honest sometimes I care but often I truly don’t give a S&*T. Marlena cares for me just as much if not more than I care for her”. Talk about polarising the crowd but it does leave people scratching their heads. The notion of a brother or family friend providing support is expected. His response kind of throws people however, it makes me feel part of the conversation from that point on rather than the pitiful person with a disability reliant on people her whole life. Also stating that I care for him balances the dependency perceptions some people may have. A person with a disability can be a carer as much as the person who obviously does some of the physical components of hanging with a wheelie. 

Inspirational: There has been much written on this term in relation to disability so I will summarise my views with this statement:

 “I aspire to inspire as should every single person on this earth. However, I am yet to have achieved such accolades or anything to warrant that badge thus far in my 32 years on this earth. Having a disability I have done some cool sh#t (that potentially may have broken some perceptions along the way) but this doesn’t qualify me to be an inspirational figure. My life is interesting and evolving but many who bespoke this title on me barely know me and it says more to me about how some people may perceive disability. I am sure my disability peers can relate”.

Clearly, there are many more terms, phrases and words... 

Terms such as handicapped, retarded and such are clear no no’s and rightfully so. As wrong as they are we have to accept historically these words were totally acceptable. There are “in words” currently that seems ok but when we dig deeper are still not quite right, despite best intentions. I try to look beyond the words and suss out the person saying them and the context in which they are engaging with the person with a disability. But sometimes it is tough because words stick and can tell you a lot about a person. 

Words can hurt and devalue a person with a disability like anyone else.

Words can have a lifelong effect on people.

Words can fuel people’s misconstrued or preconceived perceptions of the role people with a disability play in our communities.  

The flip side of this though is Words can also be used to value a person, encourage a person and used to promote positive roles people play in their communities. So regardless if the word of the moment appears to be right have a think how it makes a person feel. 

What’s in a word? 

Well, quite a bit it would seem, right? 

About the Author: 

Marlena Katene is Australia’s most unique entertainment journalist. Having Cerebral Palsy Marlena communicates via an ABC Board and iPad. After completing her Bachelor of Communications degree Marlena has been blessed to interview a wide range of people ranging from Ed Sheeran, Robbie Williams and even the Dalia Lama. While her journalism focuses mainly on music she also has written on other issues and freelance writes for a variety of magazines. Apart from her journalism work, Marlena is an avid traveller and adventure seeker. In 2016 she became the first person in the world with Cerebral Palsy to Base jump, achieving this feat by jumping off the 421 metre KL Tower in Malaysia. Addicted to travelling she is always seeking the next adventure and place to explore.