It was always an unspoken fact within my immediate family, that being born with Cone-rod dystrophy, a rare group of related eye disorders with degenerative impacts, I would eventually go blind. How and when that would happen was not sure, but it was always there in the background as my vision deteriorated over time and I adjusted to this unavoidable outcome.
Neither of my parents realised they were carriers of this gene as the condition never presented itself for them. It was only when my oldest sister Donna was born with about 70 per cent reduced vision, that the genetic condition was diagnosed, so it was determined they both must have been carrying the gene. Consequently, only two out of their three daughters, me being the youngest, experienced vision loss.
Growing up in Broken Hill, NSW, there wasn’t an eye specialist locally, so yearly visits to Adelaide for my check-ups with my dad, who was my primary carer, seemed like little holidays, and made a dire situation a bit more adventurous.
For both primary and high school I attended a mainstream school and despite the difficulties, I managed to make the most of my learning experience. My greatest challenge throughout was reading the blackboard. The contrast of white chalk against a greyish background was difficult to make out and when that was replaced by an overhead projector at high school, I had to ensure that I received a copy of the material in larger print prior to the lesson, otherwise I would just sit there for 40 minutes doing nothing.
Coping at school
At eight, I had a teacher’s aide come in weekly to teach me typing. It was decided early on that learning to type was going to be a useful skill for my future. It turned out to be the best skill I was ever given and I have used in my learning and professional career extensively.
When it came to sports, my primary school teachers worked around the system and would choose activities that I could participate best in like soccer, gymnastics, or athletics. But once I got to high school that flexibility was gone. I would find myself sitting on the sidelines writing lines with those who had forgotten their PE uniform. In hindsight, it was not my fault that my disability stopped me, but back then I was not good at advocating for myself, and I just complied with the fact that the teacher didn’t know how to manage the situation.
Sadly, when I was 15 my dad passed away suddenly. I was dealing with a lot of grief, and I experienced depression, anxiety attacks, even suicidal ideation. I wasn’t offered any support. It was just a matter of me working my way through it as best as I could.
As a teen, I struggled with wanting to fit in with my peers. Not being able to made me feel like I was ‘less than’ and that resulted in poor self-esteem and lack of self-confidence. In turn, I had to come to terms with the fact that what I had always dreamed of doing, becoming a journalist, was not going to be possible, given that I would completely lose my vision in the future. And while I did have a great group of friends at school, there were still the ones that would stick their foot out for me to trip over or would move my bag, so I couldn’t find it. Little things like that gradually did wear me down and the stress compounded and affected my eyesight, which deteriorated noticeably during senior high school. As a result, I began completing my exams by dictation. It was again just a matter of me finding out ways to adapt and work out things that little bit more.
What helped me find perspective and have a positive psychological shift was doing a presentation during year 11 about youth suicide in rural areas for legal studies class. That’s when I realised that I wasn’t alone in my struggles and how I could become a social worker and use my lived experience to help others. Once I came to that conclusion, I became completely focused on getting the grades to enter university.
Following my dad’s passing, I was also given the opportunity to travel to Sydney to attend Vision Australia camps. For the first time I met about 20 other kids who had similar or worse eye conditions. Once again, I became aware that I wasn’t alone and being able to participate in activities like abseiling, water skiing, and horse riding really boosted my confidence. Through that I realised that I didn’t need to let my disability stop me from doing things in life and I started making dreams about my future, knowing that I could achieve them. In addition, being one of the most popular kids at camp in contrast to being bullied at school, helped me begin to build self-esteem.
Right after graduating high school, in 1994, I made my dream of studying social work a reality, when I received a position at the University of Western Sydney.
I rented a small flat close by and I lived by myself. I loved my newfound freedom and I still had partial vision, so I could easily jump on a train and explore new locations and visit friends I had met during camps.
Then a year into living in Sydney I met my now ex-husband and I moved to Maroubra to live with him. That was a challenge, as it took me over two hours to get to university, but I managed to complete my studies and I graduated in 1998, with my Bachelor of Social Work.
During my first year of studies, I completed my five-month work placement with a HIV/AIDS Infoline clinic in Surry Hills and then continued for three years volunteering for their infoline once a week. Six months after my graduation, a paid position came up in the clinic in their health promotion department and I got the job. I stayed there for the next seven years.
In the meantime, in 2003 and 2005 respectively, I had my two daughters, neither of whom inherited my eye condition. Prior to having my first baby my eyesight began to deteriorate even more and I had to learn how to use the cane. Further, I had to think about things a little bit more, like not being able to drive my child to day care and how to manage any potential emergencies. But with careful planning it all turned out fine and I was able to care for both my children during maternity leave such as feeding, changing and bathing them perfectly fine on my own.
After I returned to work, my husband, who worked in the hospitality industry, reduced his shifts and became their primary caregiver, handling the kids’ external activities like playdates and swimming lessons.
Empowering myself
Once again, the impact of stress on my eyesight became evident following my divorce in 2008, age 30. I suddenly found myself having no-one around for support and the separation from my children, as my ex-husband moved to Newcastle taking the kids with him, impacted my eyesight negatively. The white cane once again came out and I had to learn how to navigate around the neighbourhood and rely on public transport. To see my children more often, I stayed with a school friend in Newcastle on the weekends and the stress of making my way up there, also further impacted my vision.
From that experience I made a resolution that I would never again give up my independence. I would develop the skills to manage my disability no matter how hard that got, but also prioritise my happiness.
Consequently, when I met my now husband, I moved to Melbourne in 2010. To see my daughters during school holidays, who were still too young to travel unaccompanied, I would catch a flight to Newcastle at midday, have the airline staff walk me to pick them up at the check-in point, get back on the plane with them and be home at 4pm. I would then do the same trip to take them back to their dad.
For five years I worked as a disability employment provider, through which I learned the challenges people with disabilities face and how to support them through advocacy. I subsequently transferred these skills into my current employment, for the Department of Transport, where in addition to working in their customer resolutions department I am the chairperson for our disability advocacy staff group, and I ensure that other employees are supported in their workplace.
Now that I can advocate for myself in the workplace, this has meant that I have flexibility to also work from home when I need to, so I have a great work-life balance. I also run my private life coaching business and do professional community and corporate speaking in relation to resilience, drawing on my own lived experience.
Thanks to the National Disability Insurance Scheme (NDIS), I can have a support worker to take me to the gym in the morning or my pole dancing classes which I can’t access on my own. That gives me autonomy and it also means I don’t have to burden my partner with carer’s fatigue.
My unique skills & abilities
In the past few years I’ve really learned to embrace my disability and despite some bad days, where I wake up wishing it was easier for me to do things, like drive a car or not have to use adaptive technology that can be frustrating, I’ve realised that I have my own unique skills and abilities, and life is about being me and using them to the best of my ability. Consequently, my disability is something that I can be proud of, and I work with it instead of against it.
Seeing my daughters, now age 18 and 20, all grown up has been rewarding in that I got to parent them. Being raised by a mum with a disability has made them more aware and less judgemental of people and that makes me proud.
I’m now currently studying a Graduate Certificate in Professional Equity and Inclusion through the University of Newcastle, to further my understanding of diversity and inclusion in the workplace.
I’m going to continue sharing my perspective in the hope that I can help others have a positive outlook on life. There are plenty of opportunities in the world, you just need to have the right attitude.
Photograph: Fotograf HQ.
