Epilepsy almost cost Beck Biddle her life and she was bullied because of it, but the self-advocacy worker is now using her experiences to help other people with disabilities. After accepting her own intellectual disability, she is now taking her message across the country and speaking up for those who can't. KATRINA LOVELL reports.
There was a time when Cobden’s Beck Biddle couldn’t get on a train or cook her own meal, but now she is flying all over the country and hosting her own dinner parties.
For her mum Jan, 37-year-old Beck is an inspiration. “To come from where she was, someone who couldn’t walk or talk at age three to where she is now is just unbelievable,” she said.
“I’ve had so many people say she’s an absolute inspiration to people with disabilities.”
She said her daughter never let her intellectual disability stop her from doing things. “Most people will sit back and complain, Beck never did,” Jan said. “She’s got health problems that are only just getting addressed, thanks to the NDIS. We’d just slipped through the cracks.”
Since February, a support worker has been coming to her Cobden home and teaching her how to cook recipes from scratch, not just out of jars and packets. “It’s been a godsend,” Jan said. “The support worker she’s got now is just fantastic. He takes everything slowly.”
In the past few months she has not only started cooking for her and her mum, she has hosted dinner parties and even whipped up a couple of birthday cakes to rave reviews for family and friends. Even her friends’ kids, who are notoriously picky eaters, are impressed.
It’s a new lease on life for Beck who works part-time running the Facebook page for the Self Advocacy Resource Unit (SARU) in Melbourne and also helping arrange self-advocacy meetings and conferences.
Getting on a train by herself to travel to Melbourne for work was not something she was able to do until just a few years ago. “There was a time there she wouldn’t even get on a train,” Jan said. “Now it’s like second nature to her.”
When Beck was about 16 she was on her way back from a friend’s place when she was asked to move to the first-class carriage, but when the train stopped at Camperdown the doors automatically locked.
“I went to open it and it wouldn’t open. I had to run all the way to the B carriage and open it. It nearly brought on a seizure,” she said.
At age six, Beck was diagnosed with epilepsy after she started having seizures at school. “I used to get bullied because of it. I was bullied through primary school right up through tech school,” she said. “I didn’t have any friends in school.
“Because I was bullied I suffered from depression and anxiety from the age of nine.”
Under the NDIS, Beck is now waiting for a seizure pad to arrive which will monitor her while she sleeps and buy her mum some peace of mind. “I basically slept with one eye open,” Jan said.
She gets emotional recalling the day she almost lost Beck to a seizure when she was 18. “She came around the corner of the house, she hit her head on the van that was there, then hit the clothes line and hit the concrete and she bounced like a rubber ball,” she said. “I was watching her go grey. I thought ‘I’m going to lose her’.”
I was watching her go grey. I thought ‘I’m going to lose her’
Jan said it was her new partner Bob who was there to help and probably saved her. “When we got together I told him Beck and I were a package deal. He just took Beck under his wing,” Jan said.
Bob, who passed away last year, was the one who inspired Beck to volunteer with the SES, which she did for five years, helping out at serious car accidents, floods and other events. In 2011, she received an Australia Day award in Cobden for some of her other work.
Beck is a member of numerous other advocacy groups including the Victoria Self Advocacy Network, the All Abilities Self Advocacy Group South West Victoria and the NDIS working group
When she graduated from her Leaders of Tomorrow course, the ceremony was held at Parliament House in Canberra.
And last year, as part of the Australian self-advocacy project, she travelled to Sydney and Canberra with two support workers to talk to self-advocacy groups and disability support organisations about how they can come together for the benefit of their clients.
“Self-advocacy is about learning how to speak out about my rights and teaching others to do the same,” Beck said.
She’s also a member of the All Abilities Choir who recently performed at the Lighthouse Theatre and Port Fairy Folk Festival.
“I saw Beck and I was just blown away. You’ve got these people with so many health issues and disabilities and they all go together and all the disabilities just disappeared and come as one voice. It was just breathtaking,” Jan said.
Beck said she was teenager when she was told she had an intellectual disability. “It was hard to accept. I didn’t want to believe I had an intellectual disablity. I thought I was normal. It’s taken me years to accept it. Took me until about 25 before I accepted it,” she said.
Jan said she believed Beck had inherited her health problems from her side of the family because her relatives had a history of seizures and intellectual disability.
Beck still remembers walking into the kitchen when she was young and overhearing her mum and dad, who she hasn’t seen since she was a kid, talking about her. Her dad’s words stick in her mind: “’Where’s the disability come from? Where’s the epilepsy come from?’ I haven’t any of that. Why is she born the way she is?’ He couldn’t understand,” Beck said.
I’ve come so far I’m amazed at myself.
Beck, who didn’t think she would live to see 30, said that looking back on all she has achieved it was almost like she has lived two different lives. “I’ve come so far I’m amazed at myself. I’ve had a lot of support to get to where I am,” she said. “I’m focusing my life on self-advocacy.”
Her role as a self-advocacy representative came after years of searching for work after bring retrenched from her job at a supermarket which she had held for nine years. “I looked for work for five years but no one would hire me because of my disability and my epilepsy,” she said.
It was while she was a client at Cooinda in Terang that she started doing volunteer work and one of her bosses realised she had potential.
Jan said she was so proud of her daughter. “I’ve just watched her blossom,” she said.
Beck is now sharing her life story and experiences at conferences around the country about why self-advocacy matters. One self-advocacy issue she is passionate and vocal about is the public transport challenges faced by people with disabilities in small country towns such as Cobden.
Beck, who can’t drive, said she had to rely on her mum to drive her to the train station to catch the train to Warrnambool or Melbourne. But if her mum is sick, her options are limited. “That’s why it’s important to have public transport in the country,” she said. “My job as a representative is basically just going down to Melbourne and ask them what issues they’re having, I take those issues to Melbourne with me so when they have an advocacy meeting on I then bring those issues up.”
Those meetings often involve talking to transport organisations such as taxi servies and travelator companies.
“In the future, I would love to become a paid representative of an advocacy group and work to help groups around the country to better network and share information,” she said.
Jan said that Beck was starting to realise there was so much more that she can do. “I have a goal of travelling around Australia independently one day. We have a big country that I would like to explore,” she said.
She is also well on her way to fulfilling her goal of becoming more independent, learning how to budget so she can eventually get a place of her own.