Nov 25, 2011

Get in on the Celebration!

It's that time of year again!

Americans are killing turkeys in celebration of ... killing indigenous people, and we are all about to celebrate the birth of a man who got killed for his religious beliefs.

An upcoming celebration that is less about killing though, is International Day of People with a Disability, which will be taking place on Dec 3.

 This is a day to focus on inclusion, equality, positive thinking in the face of adversity, and all the amazing benefits which come from living in a diverse society.

If you are the owner of a business that is open to the public, this is the time to look at your shop front and ask: "Could I increase my sales by installing a ramp?"  (The answer, by the way, is probably 'yes.')

If you are an Australian citizen, it might be the time to show your support by going to the NDIS website and signing the petition.  The NDIS campaign has been the main focus of pretty much everyone in the Australian disability sector in 2011, and  has the potential to improve the lives of hundreds of thousands of people, currently living in extraordinarily difficult conditions (including many with CFS).

It may also be a good day to check out what is going on in your local community.  If it is anything like Melbourne, chances are there will be public wheelchair basketball games, launch events with free booze, awards ceremonies and diverse fashion shows to check out!

But what does IDPwD mean for people with CFS in particular?  Most of us won't be taking part in the basketball, that's for certain, but I'd say it is definitely a good day to be raising some awareness;  wear a ribbon or T-Shirt; write a blog or make a youtube video; or put a link to your local CFS support society up on facebook.

But, more importantly, I suppose, people with CFS can make this a day to really identify with the wider disability community.

I'll admit that for the first three years that I had CFS, I did not really consider myself to be a person with a disability.  In my mind, people with disabilities were the ones with the much more clearly defined, visible, conditions.  They were the ones in wheelchairs or the ones with guide dogs.  They were the ones who had to fight for access in buildings without lifts, learn sign language or read braille.  They were a them, not an us.  And in many ways I felt excluded by them (an irrational feeling, looking back, but I can't deny it was there).  I had a vague idea that as a person who couldn't walk very far, concentrate for very long or work enough to make a living, I should be included in this group, but always felt that as a person with an invisible chronic illness, I was somehow disqualified.  (A feeling underlined in heavy black texta by the dismissive attitudes of the first few doctors I went to see when I first got sick.)

Then I started working at Grit Media.

I will tell you now, that when a group of people with disabilities, all kinds of disabilities, start working together, you get one of the most accepting groups of people on this planet.  Working at Grit has been an incredible experience for me, opening my world up to a whole new range of experiences and world views, and I know that many other people working there feel the same way.

When you throw your lot in with such a diverse group of people, with such a diverse range of needs, you work out very quickly how best to support each other, and how to accept support without feeling like a burden.

No Limits Cast and Crew promoting the NDIS
You begin to, automatically, look for venues with good access, paying attention to details like low counters and space between tables; grab menus and read aloud for people with low vision without being asked; make things logical for aspies; hold your arm out when the guy with CP gets to the curb; help the girl with SMA back into her jacket; chop up the steak for anyone with limited motor skills; and develop a working relationship with the blind guy's dog.

You do it all without really thinking about it, and in turn, you start to be watched for signs of fatigue or pain (apparently pallor is a warning sign) by the people around you.  People start helping you out with word retrieval by making it a guessing game; waiting patiently if you have to sit or lie down for a bit without making a big deal of it; doing the heavy lifting without expecting you to help; keeping perfumes and chemicals minimal; and adjusting the menu to suit your diet without whinging about it.

When you are hanging out with people with disabilities, everyone has something and everyone has experienced discrimination in some form.  We can't all relate directly to the problems facing the others, but we are all very aware of how much difference an open attitude makes.

I also find the Grit Media volunteers to be incredibly fun.  Extreme circumstances make for extreme personalities, and while it does occasionally feel like an insane asylum (some volunteers literally have the certificates to prove insanity), it is never boring!

It's also much easier to laugh about it all with people who are not scared to acknowledge and accept.

And this is why International day of People with a Disability is important to me.


  1. OMG this is a wonderful post!

    The world you describe is almost Utopian. I have yet to experience that kind of acceptance and cooperation but it just delights me that it exists. I'm in Sydney but I will look up what is available here and try to find something to join in on.

    Thanks for writing this!

  2. Great post Naomi. You are right, working at Grit Media on No Limits has really opened my eyes to the challenges the wider disability community faces, and as you wrote, you find ways to adapt and assist them.
    It is a very cool organisation to be a part of.
    Thanks for taking part in this blog carnival :)


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