Ausnew Home Care | Tasmanian artist, author Janelle McMillan on her everyday battle to be understood

Tasmanian artist, author Janelle McMillan on her everyday battle to be understood

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I live in two different worlds.

One of respect, acceptance and understanding when I am behind safe walls at home, but the other is filled with misunderstanding, judgement, disrespect, ignorance and sometimes downright rudeness out there in our community.

I am fighting a war every day to get people to see who I really am and stop the discrimination, just because a large number of people want to stick their heads in the sand.

I am smart. I've been awarded an Order of Australia and I love raising money for charity. I have even published a children's book.

I also have been made to feel like a child, talked down to, patted on the head like a dog and made to feel invisible, like Harry Potter under his invisibility cloak.

A close-up of Janelle McMillan's legs. Ausnew Home Care, NDIS registered provider, My Aged Care
Janelle McMillan says people often talk to the person with her rather than directly to her.(ABC News: Maren Preuss)

I have cerebral palsy (CP), which for me means I have trouble talking and my body movements are jerky and uncontrolled.

It is really like living with an annoying little brother 24/7, but I don't get a break from his tricks or pranks being played on my body. He never gives up annoying me.

Living in Tasmania, I am one of the 1.2 million Australians that have a communication disability — I have complex communication challenges every day of my life.

I could use a communication device to talk to people but have chosen to use my own voice instead.

I have been communicating by using "Nell Talk" for over 25 years.

People can learn to understand me through time spent listening to how I say the words. I also spell out words when people can't understand.

I am in control of my life and make my own decisions. Not everyone with a disability is as lucky as I am or lives their life how they want.

I am an artist and an author. In 2020, I published my first children's book called Rafting, A Wheelchair Won't Stop Us, thanks to the support of Outside The Box/Earth Arts Rights, which is a non-profit association here in Tasmania.

The idea of the book is to grow inclusion and a better understanding of people with disabilities for future generations of children. So that these children will develop passion, empathy and respect as they grow into adults.

You can find my book in every Tasmanian school, along with teaching notes and a short film.

A close-up image of Janelle McMillan's mobility scooter.
Janelle says she considers herself lucky compared to many other people with a disability.(ABC News: Maren Preuss)

In 2020, I was also awarded an Order of Australia for service to the community through charitable fundraising initiatives. I have raised a lot of money for breast cancer research.

My passion is advocating that non-verbal people have a voice. I love pushing the boundaries and making people think outside the box.

Dad is my inspiration. In his terrible luck, he went from a capable bloke to someone who needed 24-hour support after having a brain aneurysm and a stroke. He couldn't string a sentence together.

It was heartbreaking for me as a nine-year-old child to witness. This is what has driven me to push myself over the years. I consider myself the lucky one.

Discrimination in public

For all of these life goals that I have achieved so far, you wouldn't think that discrimination and the lack of understanding about my intellectual capabilities would still be present in 2022, but it still is.

It is very frustrating to have people treat me like I am a child.

Janelle McMillan looks out over the waterfront.
Janelle says people often make assumptions about what she is thinking or wants to say, rather than just asking her.(ABC News: Maren Preuss)

A large number of people will talk down to me when I go out into the community.

People will talk to the person who is with me, about me, like I am not there. This happens to me a lot.

And imagine people constantly not actually believing what you've said. That happens to me.

People in high places say, 'How do we know what Janelle really said', because whoever is interpreting can make it up.

But they don't think to ask me if an interpretation is correct — my yes and no responses are as clear as day.

When you have a communication disability I find people turn into mind readers. They always have very interesting assumptions about what I am thinking or what I want to say.

This is where a bit of swearing comes in really handy.

I pity the poor buggers who have to do the interpreting for me. They have to stop themselves from laughing so much because they understood that I have sworn under my breath.

My experience is not unique. Did you know there are 1.2 million Australians living with a communication disability, stemming from a wide range of disabilities?

These disabilities could range from cerebral palsy, autism, Down syndrome, hearing impairment, strokes, multiple sclerosis, motor neurone disease and brain trauma, to name a few.

Just be yourself

Janelle McMillan smiles at the camera with the Hobart waterfront behind her.
Non-verbal people have a lot they want to communicate, Janelle says.(ABC News: Maren Preuss)

My advice to you is: don't judge non-verbal people or people who are living with complex communication challenges from the outside because they have feelings and thoughts just like you. Don't be scared about people with communication disabilities.

Just be yourself.

People need to accept that communication might take a bit longer for us, but we do have a lot to say by using different methods of communication because our bright minds work overtime.

Narrow minds are the only thing that will stop us from making our imprint on the world.

A single hello can start a conversation with everyone and not just non-verbal people or people who are living with complex communication challenges, but all people. Being kind does go a long way.


Source: ABC

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