Family & independence
These were comments delivered at AGOSCI pre-conference workshop May 2013
“Oh you’re very independent!” is a statement I hear a lot, I’m unsure if it is said with a tinge of condescension, or if I just instinctively imagine it that way. The fact is that I don’t think I’m all that independent, I mean I do what any normal 22-year-old does, I go to uni, I take public transport to the places I need to go, and I refuse to be afraid of the world I live in. However, what most people don’t see, is the unrelenting support I have from my parents and friends. I know that I can call either of my parents or even good friends if I’m in trouble, and they will drop everything and come and find me (that is, if I’m intoxicated in the city in the early hours of the morning, or even if I am on another continent). Without that security, I don’t think I could navigate the world as easily or as competently as I do.
From an early age, Lynne used to lecture me about how I was more vulnerable than other children in many ways. I think I was blessed to have an adventurous twin sister, who made the risks I took seem not as great. Lynne used to just not look when I rollerbladed for the first time or climbed on the monkey bars in the school playground. My father, Craig, on the other hand, would help me work out ways to do the things my siblings did. When I was a baby and I was so fed up with my stubborn body, he built me my “office”, which was a chair I could sit in with a table around it so I could play with my toys comfortably without toppling over. As my mum would say, this is the reason I have two parents.
I often use stories from my childhood as a way of demonstrating that I was always given as much freedom as my brother and sister. However the trickiest part of all has been the transition to adulthood, because it’s no longer feasible that I’m treated exactly the same as my siblings, since I still need that extra bit of help. And intellectually I know this, but emotionally, it’s still a struggle to accept. That is the main conflict of having a disability I guess, knowing that I’m vulnerable and incapable in some areas of my life, but actually feeling otherwise. I am the first to admit that I’m quite naïve and feel like I can deal with most situations I choose to put myself in.
Not being verbal drastically influences my ability to keep myself safe, and it limits the speed of which I can contact people. Lynne, like most mothers, worries incessantly about her children, but as she will tell you, when she became a mother, she quickly learnt the art of surrendering. She doesn’t need too much to ease her worry, just a text message here and a phone call there. Lynne has said she doesn’t know if she could have parented without mobile phones.
When we became teenagers, Lynne perfected the art of apologising to add to her negotiation skills, but even so I was very hostile towards her. I think we both struggled with figuring out how to balance necessary dependence with much sought after independence. Well, she and my dad did, I just wanted to be left alone and at the same time, still needed support, so I would lash out. I would do my best to scream the house down, and couldn’t be bothered explaining why. My frustration and unhappiness was as destructive to myself as it was to my parents. My siblings just opted out of the situation, but it certainly doesn’t mean it didn’t affect them.
I have watched both my brother and sister learn to drive, move to different cities, and make lives away from our family. And although those things aren’t practical for me right now. In my own time and in my own way, I will create a life that I’m happy with, because I know I will be supported and encouraged