I was born in Kajo-Keji South Sudan to a peasant family. I don’t know what year I was born. It was a home birth in the village with no birth certificate, so my mother didn’t remember the year I was born. The year of birth in my visa to Australia is 1977. I don’t look or feel 41 years old, so I calculated and guessed my age to a more realistic age which is 37 years. Unfortunately, I have not been able to change my age to the more realistic one here in Australia because I don’t have a Birth certificate to prove my age. If I was four when I contracted poliomyelitis, then I am 37 years old now but not 41. My father was a primary school teacher in 'Beliyak Primary School in Kajo-Keji South Sudan, and he also worked as a cleaner in Mundari Hospital in Kajo-Keji South Sudan. My mother didn’t have the opportunity to pursue education due to the South Sudanese cultural practices where women are trained to be housewives, mothers and family/community carers. My parents were divorce when I was four years old and my mother went to live with her relatives in a village called Lomura leaving me and my siblings with my father. In the South Sudanese culture, children belong to their father. In any case of marriage, relationship or family breakdown the woman will leave without her children and that was what my mother did. A few months later, my three sisters and I were reunited with our mother after our father took ill and was unable to look after us. I am the youngest of six children and I am from the South Sudanese Kuku community. I speak the Kuku language and English. A few weeks after settling in my mother’s village Lomura, I contracted poliomyelitis. One morning in Lomura Village South Sudan, I woke up with a high fever and a body paralysed from neck to toe. I was not able to stand or sit up. My mother gave me a medicine made from local herbs, and she invented her own form of physiotherapy treatment where she massaged my body in cold water every morning. She also tied my hands to two poles to support me, and she left me to stand there for an hour every morning and evening for two to three months. I had to learn to sit and to walk again, and I eventually regained strength in my upper body. Thanks to my mother, who worked tirelessly, I was able to walk again, though with great difficulty.
There was no immunisation available in South Sudan when I was born to immunise children against polio. I was left with a weak lower back, a deformed and painful right foot, and a very weak left leg. My left leg is 2 inches shorter than my right leg which makes balancing difficult when walking. I bend forward when walking, putting a lot of strain and pain on my lower back. I now suffer from post-polio syndrome, which is associated with headaches, muscle, bone and joint pain, fatigue, and general body exhaustion. I limp and have a lot of falls causing injuries. In December 2015 when I was pregnant with my now 3-year-old daughter, I had a fall and fractured my left ankle. Wearing a plaster for 6 weeks meant that I had to learn to walk again as the plaster had weakened my left leg muscles even more. I am on a waiting list for surgery to fix my right knee. I am on medication to manage the pain in my right knee. I use a wheelchair outside of the house to access the community. I try not to use the wheelchair much to keep my muscles strong and active. I use my left arm to push my left knee back when I am walking for balance to aid my mobility. I have damaged my left elbow because of the way I walk and now I am waiting for surgery to fix my elbow. When I was young, my legs muscles were stronger and I was able to walk for 10 to 15 minutes without resting but after I turned 25 years old here in Australia, my muscles started to weaken. Now I cannot walk for five minutes without resting and falling. My sight in my left eye is weaker than the sight in my right eye. I also choke while swallowing. I now see a speech pathologist funded by NDIS to manage my swallowing. I was diagnosed with late effects of polio called Post-Polio Syndrome here in Australia 13 years ago.
In 1987, my family and I fled the Sudan civil war and resettled in Uganda where I grew up in three different refugee camps for 19 years before migrating to Australia. I migrated to Australia in July 2005 as a refugee where I completed a bachelor’s degree in social work in 2007 and a master’s degree in Mediation and Conflict Resolution in 2014 at the University of South Australia. I am a single mother of two beautiful daughters aged 8 and 3 years old. I worked with Families SA and Disability SA from December 2007 to July 2013 as a social worker, Case Manager, Service Coordinator, Intake Coordinator and as a Facilitator. I was also the Founder of, and the Coordinator for, the Crossing the Bridge Project in 2014 which was aimed at supporting African Women with Disabilities in South Australia, and supporting mothers of African children with disabilities as wells wives and female family members of African men with disabilities in South Australia. I ran for Parliament with Dignity Party SA (formerly known as Dignity for Disability) in the Upper House as a Lead candidate for the South Australia’s State Election in 2014 and I was also on the Dignity Party’s Upper House ticket for the 2018 South Australia’s State Election, representing people with disabilities in South Australia. I was the first African Woman from a refugee background to run for Parliament in Australia.
In March 2019, I published my first book Beyond Calamity which is the story of my life journey, contracting polio in South Sudan as a 4 year old girl and surviving that, growing up in 3 different refugee camps in Uganda, growing up and overcoming challenges as a girl and as a woman with a disability in the South Sudanese Community, migrating to Australia as a refugee 14 years ago and overcoming challenges on a daily basis as a single mother and as a woman with a disability. My book is available on the publisher’s website Vividpublishing.com.au/beyondcalamity and it’s $30.
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