The Voice of Disability

Imagine this…

A small boy is watching the stars with his father when they notice a strange object in the sky.  It turns out to be an UFO, and the next day, all communication devices are taken over at the same time as a thundering voice comes from the sky itself – all delivering the same message:

We have decided that you are unfit to rule this world yourself so we have taken over.  In order to accommodate your needs and give you the best life possible, we have had consultation with a representative of your species who has helped us decide how best to build this nirvana for you.

The aliens, with a snap of their finger equivalents, change the Earth into what they imagine is paradise for all.

Suddenly, there is a basketball court on every street corner.  Sadly, there are no other indications that any other sport exist.

English is the language for all, whether they understand it or not.  All writing is now displayed in English, whether people can read it or not.

Everyone must now become a vegetarian, and all strawberries are destroyed.

The opportunity for individualism is lost.

And so it is when any group of people get together and decide what is best for a certain demographic of people.

There is a Congressional hearing in the US on Autism this week.  On the first day of hearings, they heard from two Directors, a Board Member, a Co-Founder, two Presidents, a Coordinator and an Executive Director.

These people do not have Autism.  The good news is, apparently some people with Autism have been invited to speak.  The bad new is, this is pretty rare as anything more than a token gesture.

Looking a little closer to home… I really do not need to single out any one organisation, because they all do it…  We have a culture here where “professionals” are placed at the top of organisations that deal with disability issues – from specialist organisations that deal with one particular disability, to more broad themed organisations that deal with all types and kinds of disability.

The next on the list of people that gain high standing in these organisations, are those that have worked in the industry for however many years.

After this, comes carers and family.  These are the people who are often given attention as being “in the know”.

And then, well that is about it.  We do not really hear from too many people after that.

People with disabilities have a brain, opinions, know what they want and need, and (most of the time) are quite capable of speaking for themselves.  Why then, are we often the last to be heard?  This culture of asking everyone else BUT us first, has to stop!

And when asking about disability in general – it is not enough to merely ask one or two people to speak.  Having paraplegia is vastly different to being in a wheelchair because of pain.  Having a mental illness is vastly different from having Autism.  Losing a limb is vastly different to being born without one.  When society needs to know about disability, they need to know stories from all areas of disability, not just hear one person’s version and then believe they have enough information.  They do not have enough information.  They do not have nearly enough information.

It is the equivalent of an alien race coming to Earth and believing it is enough to ask one person what Nirvana should look like without taking into consideration the multitude to cultures, belief systems and personal preferences we all have.

Disability consumer and activist. Pissed off since 1995... Mad as a hatter since way before that.

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Posted in Autism, Disability, Ehlers Danlos Syndrome, Mental Health, Personal

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Pissed off since 1995. Mad as a hatter since way before that.

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