Trina’s Inspiring Cerebral Palsy Story

Trina's Inspiring Cerebral Palsy Story
Posted on Thu 18 Nov 2021

This article was originally produced and published by Water NSW 

"A hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles."
-Christopher Reeve

Around 34,000 Australians live with cerebral palsy – and 1 in every 500 babies is diagnosed with it. But cerebral palsy (or CP) is often misunderstood and stigmatised. Not all people with CP use a wheelchair, have an intellectual disability or are unable to speak.

We recently had the pleasure of meeting with Trina Thornbury, Front End Developer, who is based in Dubbo to discuss CP, a neurological condition caused by brain damage that affects millions of people globally. “It is the most common motor and movement disability”, Trina explains. “It can be caused in utero, during birth or from a severe accident.” For Trina, it was 15 minutes without airflow to the brain from placental abruption during birth.

CP is broken down into several different types to describe how certain brain damage can affect overall motor skills. The classification of CP depends on the type of movement issues and the affected body parts. There are four major typesof CP: spastic, athetoid, ataxic and mixed type. Trina has two, ataxic and spastic hemiplegia with GMFCS level 2 (Gross Motor Function Classification System).

“When I was born, I was level 3 which means I had to walk with some type of apparatus. I went from a frame to crutches to freestanding. To do so, I did 12 years of constant therapy to regain better mobility.”
- Trina Thornbury, Front End Developer

 

Disability is often misrepresented with so many stereotypes and myths. “In regard to CP, people believe we have a limited future. It’s true that people with CP have shorter-than-average life span due to wear and tear on the body making abilities become more restricted,” says Trina.

“But you are still able to live a rich and fulfilled life. You can still have friendships, romance, careers, or accomplish great things.You’re not limited, you’re still able to do those things. Through hard work and determination, anything is possible.”
- Trina Thornbury, Front End Developer

However, one of her toughest challenges comes from being treated differently.

“Unfortunately, even as an adult I still find myself getting treated differently.

In primary school, I was a loner. During high school, I was bullied. After university, I was excluded and rejected. Once I was even fired, being referredto as a ‘broken engine’.

“I wish I could share positive stories of having a disability and being treated differently, but unfortunately, it’s always from a negative perspective.

“You do have to have a very tough skin. I have developed coping mechanisms likea strong sense of humour. I ‘take the piss’ by teasing myself; I even have a tattooon my arm that reads ‘Error 22’ which means, 'device is disabled' incomputer terms.”

Trina faces added daily life challenges by having CP due to her limited mobility.She makes choices to make her daily life easier such as not wearing button upshirts or shoes with laces, she keeps her hair short because doing anything thatrequires fine motor skills will trigger a lot of pain.

Real inclusion is stepping out of your comfort zone to learn about others. It’s thepractice of ensuring that people feel a sense of belonging and support. Trina’s advice for people talking to anyone with a disability.

“Treat them the way you want to be treated,” she explains. “If you highlight their disability, it will make for an uncomfortable situation. For an example, if someone is in a wheelchair, do not crouch or lean to their level. You may think you are helping but it’s a sign of disrespect.” - Trina Thornbury, Front End Developer

The ability to embrace life with cerebral palsy is centred on acceptance, optimismand support. From a work perspective, it’s a given for companies to provide the basics in terms of accessibility for people with disabilities such as speciality equipment, disabled parking and wider doorways for wheelchair access.

“The one thing that companies don’t think about is the working conditions for those with a disability,” discloses Trina.

“Things like additional breaks, shorter days, regular holidays, rest periods throughout the year. People with disabilities do burn out quicker than those without as it requires a lot more energy to do basic tasks; like walking and talkingis very hard for me. I can’t write one sentence without pain shooting up my arm."

“We are very limited, and fatigue quickly kicks in. The more you do, the faster you burn out, and then when you do burn out, it takes weeks for you to recover. That’s just unproductive for the business and bad for your overall health.”

Trina is grateful for the arrangements she has in place at WaterNSW.

“I’m very lucky, I only work school hours, but it can be hard to walk away from the computer when your computer is at home.”

Trina wants to represent those who have a disability and give a voice to those who can’t, too afraid or don’t know how. “If I can lead by example and spread awareness, that would be great to start. Education starts with a conversation,” says Trina.

For anybody wanting to get involved, “Start local,” Trina explains. “There are a lot of communities out there that need support. Companies like Cerebral Palsy Alliance, intervention centres such as Orana in Dubbo etc. The best place to startwould be Facebook, in a forum. If there is a community event, a fun run, walk, or pop-up attend them and show your support. At the end of the day, that is all we really need - support!

Trina was a client of CPA in Sydney, until the age of 14, back in the days when we were the Spastic Centre. 

If you're interested in being part of our CP community please join our Facebook Community Group page and CPActive, our campaign community, raising the voices of Australians with disability. 

Welcome to the wrap up episode of Season One of Cerebral Conversations. Here are some highlights and never heard before stories from the great minds at Cerebral Palsy Alliance (CPA) and our special guests and hosts.

It’s been a weirdly wonderful time for me – you might’ve noticed I didn’t share a column with you in October? That’s because I was racing toward the finish line of my university degree, a double in Arts & International Studies if anyone was wondering. Four years of my life that unfolded in ways I never could’ve predicted.