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Spina Bifida Awareness Week: Lisa's Story

Spina what? Spina Bifida. You may have never heard about this disability, even though you may have passed by someone in a wheelchair with it, a staggering 150 Australian babies each year are born with it. This week is Spina Bifida Awareness week, and it’s the perfect opportunity to introduce Lisa, a member in SACARE’s community, and a wonderful soul from Adelaide.

 

By Milly Toovey

I had the pleasure in meeting Lisa in her cosy home in Northern Adelaide and she shared what it’s like living with such a severe disability, but mostly, I wanted to know who is Lisa without the disability, after all a disability is a label, just like a gender or race, and labels do not define who we are.

Lisa was born with Spina Bifida in 1974. This means she was born with a split spine. Spina Bifida is the most severe malformation of the central nervous system and resulted Lisa to lose feeling in her legs and the ability to walk as well as incontinence. Some people also suffer with brain issues, however as Lisa told me, “I am one of the luckier ones who doesn’t have a shunt on my brain.” I immediately started to pick up on Lisa’s powerfully positive attitude and gratitude for life. “My life expectancy is normal, I’m not going to get worse, unless I stop looking after myself, but that goes with everyone.” What a great point! This made me think how so many of us who are totally capable of looking after ourselves, still find excuses not to go to the gym, or to eat our sorrows away with that naughty something we know is only going to make us happy short-term. Look, sometimes, we need someone to help us keep us healthy, whether it be a personal trainer, or a nutritionist. Disability or not, it’s a comforting feeling knowing there are people out there to help. For Lisa, she is grateful for her support workers from SACARE who visit her on a daily basis. “They look after me, they help me shower every day, and they even help me with housework.”

 

“I left school in year 10, it really wasn’t a happy place for me.” We shared some of our experiences in school, and I told her how I cried when a teacher picked on me to answer a question in front of the class, because I was so shy and afraid to open my mouth. Lisa said, “Picture that moment, that feeling, and put yourself in my condition and in a wheelchair, people already think you’re weird!” That certainly put things into perspective and made me realise how strong and resilient Lisa had become since those tough times in school. Life for Lisa had a positive spin when she joined a Pre Vocational Course a few months after school. She was able to come out of her shell and connect with likeminded individuals, and even met her husband! “It was quite a happy time in the end. Some of the students had disabilities and we were taught how to live in the real world. We were taught fundamental life skills, from budgeting, to looking after ourselves, to going for a job. I was there for two years, and twenty-five years later, I’m still friends with a couple of the students!” Isn’t it incredible, that no matter who we are, or what stage in our life we’re at, as human beings, we need to be connected with the ‘right tribe’, people who understand, can help us grow and most importantly, make us feel happy and not alone. “The highlights from this course, were definitely meeting people and making friends, oh and cooking skills!”

This course gave Lisa a new lease on life and head start into adult world. In 1993, Lisa moved in with her boyfriend, into his “bachelor pad”, and they married in 1997. For eight years, she was a volunteer advocate for Disability Action and expressed her concerns about things that were interfering with her life, for example, making sure each bus in Adelaide had a bus ramp for easy wheelchair access. By the sounds of things, her voice was being heard and Lisa’s contribution to society was making a huge difference in life for people with disability. Unfortunately Disability Action closed down due to lack of Government funding.

If Lisa had a magic wand she could wave on the South Australian government, she would like them all to “Listen to what we [people with a disability] want and need, rather than taking action on what you think we need.” She continued to say with frustration, “They’re so busy making the Adelaide Oval prettier or Rundle Mall better, sometimes I think they forget that one in five South Australians are living with a disability.”

One of the most beautiful attributes about Lisa is her gratitude for care.

“I’m so lucky. I have constant support from SACARE, a loving husband, close family, and my parents are still around. A lot of people aren’t as lucky as me.”

By this stage, I had forgotten about Lisa’s condition, and the fact that she was in a wheelchair, she certainly demonstrated a powerful attitude. We all have problems and issues we have to go through, some immensely more difficult than others, but no one is alone, and what we must realise is that we are all lucky.

Lisa spoke highly about the positive impact the Pre Vocational Course had on her life, as well as the Disability Action she was a volunteer for and the Spina Bifida Association which arranged social events that she was a part of. These groups gave her the opportunity to connect, make friends, and grow, sadly, all of which are no longer around. Thankfully for social media, she’s now part of a Spina Bifida Facebook group, however nothing beats that face-to-face human interaction. Let’s hope that something is on the horizon that strengthens the disability sector community within South Australia and connects them to broader society.

I asked her what is the most challenging thing she has to deal with on a daily basis, and she said, “Dealing with being in a wheelchair, and all the things that go with that.” The one thing that frustrates Lisa more than anything else when out in public is people’s ignorance. “I’ll be trying to get down the mall in my wheelchair, and they’ll see me coming, but they keep talking, so I have to say, ‘excuse me’.” If Lisa had a megaphone, she would yell,

“Just be aware of your surroundings. Not everyone is the same height as you, people in wheelchairs need to be recognised and not ignored.”

“I also wish that people would not be so awkward in social settings. Look, I’m not the most outgoing and socially confident myself, but when I meet someone for the first time, I see the look in their face, they’re thinking, ‘what should I say or ask?’, then they usually ask ‘what do you do?’ (the standard question), and I respond with ‘I don’t work at the moment.’ Then I can see them struggling with what to ask next, so they might try again or just go, ‘ok, err, nice to meet you.’ There are other questions to ask, as simple as ‘how are you?’, ‘what is your name?’, and ‘what are your hobbies?’ and then, let’s see how the conversation flows.” That then flowed nicely into the next question about hobbies, ‘Believe it or not, I have a cruising addiction. I went to Perth last year and loved it. My husband and I are soon to go on a food/wine cruise around South Australia, and we’re going on another one in 2019 for my husband’s 50th. Holidays are always nice, money doesn’t buy happiness, but it buys freedom. I love reading, I used to be part of a book club and I wrote reviews, I love adult colouring books, and I love watching movies, Twilight and horror movies are my favourite. I enjoy playing with my pets, visiting friends and having friends over… normal things!”

Other than cruising, reading and watching movies, Lisa volunteers at Lyell McEwin Hospital one day a week where she puts files together in the emergency department. She also loves to help out with gift wrapping at Elizabeth Shopping Centre and you may have seen her this recent Father’s Day!

“I must admit, I’m not a negative person. A lot of people get bogged down with living with a condition like this. I refuse to let it bring me down, because what’s the point? Don’t get me wrong I have my down days like us all. I have had so many friends in the past who were so negative, ‘Poor me I have a disability, life is so unfair, nothing works for me… nothing’s ever good, nothing ever happens.’ Their energy always brought me down. But for me, I always think that there is something to look forward to. For sure, I have days in hating the world for whatever reason, but I get over it quickly."

"Life is short, and there are so many things to be grateful for. I suppose, life can be better, we can all say that… but it could be a hell of a lot worse!”

 Lisa, thank you for taking the time for sharing your story, your frustrations, but most of all, thank you for sharing your positive attitude and wisdom for a happy life. We can all learn from you more than you realise…

 



 

You can read more about Spina Bifida here.

If you’d like to know more information about how SACARE can help provide you with in-home care, visit this link or call 1300 145 636.