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Cosplay beyond all disabilities
"Friedreich Ataxia is a progressive degenerative disease of the nervous system; it depends on the degeneration of the spinal cord and cerebellum (the movement control center) and causes ataxia, that is, lack of coordination of movements. Early manifestations include difficulties in balance and motor coordination, which make it difficult to perform activities such as walking, writing, speaking, etc. "
AF... meaning?
AF... meaning?
On the right you can read the technical explanation of Friedreich Ataxia (AF is italian acronym) that you will find online, more or less detailed.
Who I am? I am a writer, of course!
And I have been a cosplayer since 2003.
So I learned how to use the sewing machine, to create accessories and objects by sculpting polyurethane with a cutter, to style wigs, to make up etc.
In short, for me the concept of 'limit' sounds like:
"Is it difficult? Ok, let's do it!"
Having Friedreich Ataxia (FA is english acronym) is like living in a house where you turn on the light and washing machine starts. Nothing works the way and when it should.
So everything, even eating or talking, is difficult.
However, we only have one life and someone once said that no one gets out alive.
Why waste something so precious by taking it seriously?
Cosplay... what?
Cosplay... what?
I've always been Nerd since I grew up in the 80s / 90s which is the golden age of Japanese cartoons on TV.
Captain Tsubasa, Versailles no bara, Sailor Moon, City Hunter, Dragon Ball...
With the arrival of the internet, in forums and websites, I found those who had the same tastes as me and in 2002 I was already in Lucca Comics to buy manga and gadgets.
Cosplay was a natural evolution.
However, I never expected where my 'strange' passion would lead me.
My first cosplay was Captain Jack Sparrow because I loved him and... I walked like him!
Friedreich's Ataxia made me stagger and walk badly, like a drunk, or rather ... a drunk pirate.
So it was that I discovered the secret that, even today that I'm in a wheelchair, makes me love Cosplay so much:
With a costume I hide the disease and just show me!
I realize what every person with disabilities would like: to finally and definitively shift the attention from the disability to the person.
This is... Cosplability!
I'm a big believer in Cosplability as a philosophy that should include people with disabilities in the nerd universe. I think it's important to consider people with disabilities as an integral and active part of any form of cultural expression.
My goal with Cosplability is to make it a real movement that pushes cosplay and nerd events, and more generally any cultural activity, to make a greater effort to ensure that they are truly accessible to all, regardless of physical or sensory limitations.
Would you like to be involved in the change?
Would you like to be involved in the change?
The book Cosplability - Differently equal
The book Cosplability - Differently equal
“It was my first Captain Sparrow cosplay that made me realise that no one has the right to decide for me, least of all disease. In my own way, by going down an unexpected path, by doing something completely different, I can.
I CAN DO.
I CAN BE.
I CAN DREAM.
I CAN HAVE FUN.”
Can art and passion improve quality of life? This is demonstrated by the biography of Alex L. Mainardi, who suffers from Friedreich's Ataxia: 20 years of cosplay and writing beyond stereotypes and discrimination.
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