Meredith Henson has lived with Moebius Syndrome since birth and wants to raise awareness of the condition, which has paralysed the muscles in her face and hands.
Meredith Henson has lived with Moebius Syndrome since birth and wants to raise awareness of the condition, which has paralysed the muscles in her face and hands. Jann Houley

Perception the biggest challenge of living with disability

THE biggest challenge Meredith Henson faces living with a disability isn't what she can't do.

In fact, having spent her whole life adapting around her disability there's not much Ms Henson isn't able to accomplish.

It's other people who often need the most convincing.

Even in 2019, the biggest barrier Ms Henson faces is a damaging misconception that physical disability equals intellectual impairment.

Ms Henson was born with Moebius Syndrome, a condition where several cranial nerves don't fully develop.

This affects her facial muscles, making her appear expressionless and impacts her speech.

In some cases it can affect hands and feet.

Ms Henson's hands didn't fully develop, and some fingers remain 'fused' together.

None of this has ever stopped her. She says she's never known any different and so was always able to adapt to meet any challenges the condition presented her with.

Ms Henson was born in Blackall, the third of five children with a brother and sister both older and younger.

In a tiny country town, there was little help for her parents when she was born, unable to suckle or feed properly because of the paralysis.

She was taken to hospital in Brisbane. She was eventually given an official diagnosis as a toddler.

Travel back and forward to Brisbane for medical treatment continued until it got too expensive for her mum and dad to accompany her, at which time they sent her with the Red Cross to a boarding home for children from rural areas with serious medical issues.

Ms Henson said this left her feeling like she had two childhoods: one where she was accepted and one where she "stood out like a sore thumb".

Unfortunately, as a child, she experienced name-calling and bullying from other children who didn't accept her physical difference.

At the bush children's home though, things were different.

Despite their different medical conditions, they were united by a shared experience - living with disability or serious illness.

Moebius Syndrome is so rare though, that when Ms Henson was travelling to Brisbane for treatment there was only one other case recorded in Queensland.

The main issues that arise because of the condition include people being unable to see her emotions through facial expressions and her difficulty eating certain foods.

"I'm aware my speech isn't perfectly clear, and people often ask me to repeat things, which is fine," she said.

Ms Henson worked in aged care as a personal carer and nursing assistant for two decades, then moved to the retail sector.

She said her first retail employer, IGA, was very inclusive and hired several other people with disabilities.

She explained that the condition didn't slow her down at work, saying "It probably was a challenge, but I just did what I had to do".

January 24 is Moebius Syndrome Awareness Day, but Ms Henson hopes to also raise awareness of other 'invisible' disabilities.

Most of all, she hopes people will look beyond face value.

"They might have to listen a little more closely to what I'm saying and to look beyond what my face is saying," she said.

"Just because I don't look like everyone else, doesn't mean I'm not the same as everyone else.

"We all still have feelings and emotions.

"I know we have come a long way, but there's still a long way to go."

Ms Henson said she would always prefer people asked her why she looked different and learnt about her condition than staring and "treating you like you're contagious".

"I know from my own experience that it takes you longer to accept who you are but you learn to love yourself."



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