Jono standing in his walker when he was a child

Navigating disability in an ableist world

Trigger Warning: Mention of suicide, bullying.

Growing up with a disability is complicated in an ableist world. From my experience, it was especially difficult in the 90s because there were little resources available about how people with a disability can live ordinary lives, or resources centring disability experiences. I love and respect my parents and know they did their best raising me given the circumstances. However, as I’ve gotten older and reflected, I see there are things that could have been done differently.

I have conflicting feelings about being raised the way I was. I believe my parents were doing what they thought was best for me. On the other hand, I think they were heavily influenced by society’s perceptions about people with disability. They were often told negative and ableist things about me, like I would not be intelligent or have opportunities in life. This definitely impacted how they raised me. I think it is important for parents to have support and awareness to be able to ignore ableist attitudes and empower their child living with disability.

I was 11 months old when I was diagnosed with Cerebral Palsy. I was not hitting milestones for a baby of that age, so my mum investigated that, resulting in my diagnosis. My biological father left my mum when she was pregnant with me. She found her partner, my dad (stepdad), just a month after that diagnosis. My stepdad is the only dad I have ever known and I appreciate him because I think it says a lot about a person to stay with someone who has a child with a complex disability.

When I was 8, my little sister came along. She does not have a disability. When she was one, she learned that I could not run, so in her cheeky style, she used to hit me and run away. She found it so funny and I thought it was cute. I would play the waiting game to get her back. It usually was a few days later when we would be playing again and she was lost in the moments of fun, I would use this as my time to strike, and was able to use my muscle spasticity to my advantage and grip her in a headlock so she could not escape. We enjoyed playing like this, as kids do and it was a happy time growing up together. As she grew up, she treated me like any little sister would treat their older brother. After all, she has known me to be this way her whole life, so that is what she has been used to.

My upbringing was typical of “Australian” suburbia. My parents did not really treat me like I had a disability, in fact they definitely tried to make me and my life appear as “normal” as possible. I look back on little things that seem so ridiculous to me now. I laugh now at the fact that they never wanted me to have a tray attached to my wheelchair, so that I looked “normal” but I already looked different being in a wheelchair, so how would a wheelchair tray make any difference?

There were advantages and disadvantages of my parents treating me like any other kid. On one hand, I have never felt limited in what I could do, say, or achieve and this helped to shape my mindset into one where anything is possible. On the other hand, I attended mainstream schools that did not cater to my particular needs due to my disability. At the time I was not bothered by this because I did not think my disability made me any different. However, I wish I had been encouraged more to explore relationships with people who had disability that would support me with understanding myself as a disabled person navigating this world.

My primary school years contain warm memories for me. I remember them as being good, wholesome years. I was 10 when I got my first powered wheelchair and gained independence for the first time. I enjoyed having a lot of friends but this was all before the age of social media so I lost touch with most friends straight after primary school because my parents decided to move suburbs. I believe that one of the reasons why primary school was a good experience for me is because the school principal had a son with CP as well, so he was extremely aware of how my experience could be and was always swift in addressing any bullying.

High school was the exact opposite. I found it nearly impossible to make friends because I felt like the kids never gave me a chance. I was bullied daily and even experienced assault. On one occasion, someone put a hockey stick around my neck. Kids used to slam doors on me because they knew I could not open them. It was already a difficult time navigating life as a teenager AND having a disability, but the bullying on top was more than anyone should have ever have to endure. My mum saw this all the time, and it got to her too, as it would with any parent. One day, she saw red and screamed at the kids who used to bully me. She got in trouble with the school and was told to apologise but never did. I honestly agree with what she did, if the school was not going to do anything about it, she was. The amount of children that we have lost to suicide as a result of bullying is a horrifying statistic and we have not come far enough with interventions to ensure this does not keep happening. We definitely have such a long way to go. Personally, it got too much, the school had shown us they were not taking action to create meaningful change so it resulted in my leaving high school after year 10 and completing a certificate IV in accounting.

Growing up was tough and I would be lying if I said I did not think about ending my life a few times. Coming out the other end of that experience, I am grateful for going through it as I learnt so much about my own resilience, determination and self-esteem. I am still living in an ableist world, not much has changed. What has changed is me and my belief in myself and knowing that in spite of everything the world tells me, I do belong here.

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Presenter, speaker, consultant, blogger, advocate.
Dreamer, thinker, teacher, chess player, sports fan.
Son, brother, friend, man.

Based in Naarm otherwise known as Melbourne, VIctoria, Australia
© 2024 Jonathan Bredin. All rights reserved.
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