What’s in a word? – Marlena
Since a young age, we have all heard the phrase, “Sticks and stones may break our bones, but names will never hurt us”. Having a disability or being part of this community, we have resilience or thick skin that others without a disability may not. We hear words and are often talked to in the third person or, worse still, like we are not even in the room. Things are improving, but there is still some way to ensure we fall out of the “Us and them” scenario. Language plays a vital part in this journey.
I always look at the intention behind the language. I believe there is a direct correlation between the way disability is described and how people with a disability are identified and ultimately accepted in their communities. Without a positive identity, that person is ultimately on the back foot to opportunities in all aspects of living an inclusive and productive life.
When I think about the word ‘Disability’, I don’t necessarily think of a wheelchair user, someone with Down syndrome or is blind, or who has other noticeable disabilities. I define disability as an inability to perform a task or do something as efficiently as someone else. If my definition is accurate, we ALL have a disability in some shape or form. We ALL need support to live our lives to it’s fullest. I live in this utopian mindset, but ideally, I would love to see the day where we didn’t even have to describe disability and that people would just join the dots. My disability is part of who I am, not my entire being. I was born with my disability, and I will die with it. However, this is only one part of my whole identity. I have many other traits or descriptors such as business owner, journalist, author, base jumper or even daughter that describe who I am. The flip side of that, if I am honest, is I also can be a smartass, stubborn and moody at times.
When I was growing up, my mother would always use positive language around people involved in my life. Now that was a HUGE trait that my mother had instilled in her, often when others may not have been so positive. Having a child with a disability, my mother was hit regularly with negative language. It started with the doctors and continued throughout my high school years. First and foremost, my mother chose from day one that she would not refer to my Cerebral Palsy Athetosis diagnosis as the 1st point of conversation, especially when it came to my education and how I was to be supported in this. As a 30-year-old wheelchair user who is non-verbal, the reports and medical documents were often the first items on the agenda when discussing my needs. She would discuss my needs, as she would have my brother, who is a year younger than me. My mother intentionally would not describe my obvious disabilities, especially when talking to educators or the media. She still reminds me to make sure journalists or others don’t use phrases such as Wheelchair-bound, sufferer, inspirational, etc. It is a hard one being in the media myself, as often, my stories are automatically thrust into the inspirational pile. It’s tricky to balance as positive disability stories are required to move our identities forward, but we have many preconceived notions (and language) to break down.
I have seen many people try to be politically correct with their language but miss the mark on including the person with a disability. I have also seen people who have used / or still may use other terminology from the ’60s but are genuine in their acceptance of my disability. As an entertainment journalist, this has come up time and time again. In the day of political correctness, I fear that the disability movers and shakers (in the disability world) can do ourselves a discourtesy if we do angry advocacy around this. What is politically correct now may not be in a year. I recall a high-profile interview where the person talked about his lovely brother, a “Downsy”. I chose to publish our interview word for word, and this person got slammed big time. Instead of becoming a teachable moment, it triggered some people to make some nasty comments that ultimately took away from the positives of our chat. Keeping up with the word of the moment can be challenging, and I think those of us with disabilities need to acknowledge this.
I personally hate the term special as this often describes something that never is special. There is nothing special about special schools. Nothing at all! The term ‘special’ makes me cringe as I think it is a term to appease others into offering a watered-down version of what could be? To be special is something used to describe stuff on sale at Coles or Aldi! A special in this environment usually is Coca Cola or Nutra Grain. However, I have been referred to this many times over by the older generation and just run with it. I usually combat that with a bit of crude adult humour or a swear word or two. This usually works to show my normality or works the other way where the shock value is a little too much. Either way, I remain in charge of my identity. Different words hold different meanings or context for people, and I could probably write a few chapters on each of the “Disability Descriptor” words.
Moving forward, I believe the answer is open, honest, and no holds conversations with our next generation. Kids are the best and are sincere in their views and language. How awesome are children when they come up and ask the “awkward” questions? They ask these questions from a place of curiosity, not judgement. We need to continue challenging the status quo now and adults who use inappropriate terminology but also actions. We need advocates to stand up to things, which attempt to take the identity away from those with disabilities. We need to call out the language such as the R and S words, as they have no place in our society. Kids learn these words from adults, and the line in the sand must be drawn, as these words are degrading and wrong. Media play a huge role in the language being appropriate. It is very possible for a disability story to not even mention the person’s disability because let’s face it often, that is self-evident for many of us. When people with a disability are described for what they can do in a non-pity, inspirational or charitable way, we will see a stronger identity form and enhanced communities. It is a dream and something I will see in my lifetime.
What’s in a word?
Well, as it happens quite a bit really, right?
About the writer:
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 meter KL Tower in Malaysia. Addicted to travelling she is always seeking the next adventure and place to explore.