Posts Tagged ‘Family’

Differently Wired

Friday, November 8th, 2013

What does differently wired mean to someone who is that way. Some people may dismiss this term ‘differently wired’ as being twee or patronising. But it’s hard to explain things without having some kind of paradigm. So the paradigm is that due to genetics there are some hardwired differences in my brain. Is not speculative this is factual. These genetic differences affect my neurotransmitters which in turn affect my movements and my thinking. Some level of impairment is inescapable.

Throughout my life I have been accused of faking it. However there is a familial legacy that is undeniable. This legacy in a way means that I’ve grown up with a family with similar traits which has normalised these traits somewhat. You get to have people like you around you. It was also a fact that you have people around you who are not like you who become stressed about people like you. There was an early in life attempt to define what was indeed wrong with us. But as it was established that it was so rare there wasn’t really any comparator. Obviously in the 40 years of my life there have been advances in medicine and genetics that allow us to fully understand the different wiring. Well we understand it from a genetic and neurological perspective, but as an impairment it has curves on its curveballs. I see the portrait in my father, in my uncle and my cousins and my cousin’s children and in my brother. A Mishmash of odd movements and odd thinking styles that are incredibly unique but sometimes distressing. And I say distressing because it is distressing to compulsively pull your hair out or to be afraid of everyday objects. Whilst a lot of disability is located in the interactions between a person with the impairment and society, some things are just internally disabling. Chronic illness talk about spoon theory and say that spoons is only a concept that applies to those with chronic illness. Whether they are spoons, knives, forks or some other every day object as the metaphor it takes more to live when you’re differently wired.

More energy, and more processing time,more problem solving time and more endless looping of the brain. Talking about more me doesn’t mean POOR me. It means asking people to think about what it’s like to live differently wired. I know my differently wired Cousin has had to do things differently as a mother and then think about how she supports her differently wired children to be the best that they can be. And it is frustrating that people can’t recognise a rare disorder in all of its complexity and with all of its comorbidities. This is due to the fact that we just can’t accept diversity and everything must be homogenous. The homogeneity required by the school system for example has reached a point at which it has to be considered ludicrous. If you’re not of the homogenous ilk you have prove beyond reasonable doubt why and what your needs are before they can be met. In the meantime children are being squashed by our factory schools. I am so lucky that I’m not a victim of factory schooling although I met resistance in some factory schools. What is an outstanding factor in diversity and diverse people it is resilience and the matter of fact way people will just get up and do it all again.

These are
thoughts as they come

The last thing I Wanna talk about is the fact that we are moving towards a society where those with identifiable genetic impairment face greater discrimination through technology. If you know what gene causes the impairment what is the next step? Moreover are we morally ready for that step? At least 8 living members of my family might want to help you with that one.

Journey

Monday, August 11th, 2008

Tomorrow I head to WILD08. Yesterday I was spending time with family and it was interesting to see things through their eyes. My Nanna is proud – she watched the you tube video of the previous WILD – I don’t know how much she could see as she now has Macular Degeneration. She asked me if I was the only person with autism going and I said I was and she said she thought that was big responsibility. I said I was worried about the hugging – my Aunty and my Nanna noted that there was a lot of hugging on the You Tube Video. My mother has entered the world of web 2.0 and the internet at large – she now has a facebook, a blog and a wiki. I am sure she will catch up with this blog at some stage. Jeremy (my brother, also Autistic) was over from Melbourne he left early with my dad – seemed agitated, leaving is his way of coping i guess.

My step sister Amber brought Caramello Koalas for me to take overseas, good thinking!! Cadbury chocolate in a Koala shape – very Aussie. I have been trying to wrack my brain as to what to take or what people expect from an autistic woman from Australia. I have my mind – that is my biggest gift!! I will gift them some of my writing and photos. The world from my perspective.


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