By: Kate Matheson
LAST week, I was mucking around on Twitter with one of my favourite people. Like myself, he has Young Onset Parkinson’s. Unlike myself, he is super-bright – scarily so – but he kindly reins this in a bit so I can look at least sort of witty when we’re publicly conversing, for which, amongst many other things, I am profoundly grateful to him.
Also like myself, he has had a hellish year when it comes to physical and mental health, although I maintain he has dealt with the setbacks faced with a great deal more grace, and far less swearing. But one thing that, fortunately or unfortunately, stays constant, is our shared sense of humour. And yes, along with ripping various politicians to pieces, we enjoy making light of our shared disease – wait. That sounds very wrong. Our common complaint? Better – because let’s face it, if we didn’t have fun with it, there’d be no room left at all for anything else in life.
And last week, we were on particular form. There were Parky puns flying like bullets, which is an appropriate analogy because Clint Eastwood and various Westerns were involved.
Then, as surely as night follows day, as predictably as Clint saying ‘punk’ or ‘get off my lawn’… the bad guy appeared, six-shooters of offended belligerence in hand, ready to take out the Parky Corral (okay, getting my Westerns crossed, but it’s good imagery).
I received a private message from someone I’d previously had minimal interaction with apart from an initial supportive tweet after an article I’d written. Someone whom – I assumed – supported people with Parkinson’s, or people with a disability in general, in a positive and enlightened way.
Apparently not.
We were being offensive, they said, to poor handicapped (!!) people. Making jokes about serious issues. It wasn’t right, we were wicked, (not kidding) and we should stop. They would pray for both of us.
At first I thought it was a joke. Then I had a look at their Twitter history and realised their stance on disability had radically changed over the last few years.
I responded. Politely (yes, really!). Because if I had touched a nerve through their experience of Parkinson’s, of course I wanted to hear them out.
I asked them if they, themselves, had Parkinson’s. No. Did anyone in their family? No. Did a friend or work mate? No. That wasn’t the point, came back the response. I was mocking the handicapped. (Again with that word). So I was mocking myself? No answer. Then ‘GOD WILL PUNISH YOU’.
I gave it all up as a bad investment, because you can’t fight stupid, and blocked them.
Here’s the thing.
Neither myself, nor my mate, see ourselves as being defined by our disability. If we were, the only thing we’d ever talk about to each other, let alone our loved ones and friends close by, would be Parkinson’s, Parkinson’s and more Parkinson’s. But even if that is what we did choose to discuss, how we discuss it, when we discuss it, and the terms in which we discuss it, are up to us. Because though we aren’t defined by our disability, it is our right to both define and defy it. That, to me, is the individual prerogative of each and every person with a disability or chronic illness, whether mental, physical or both.
Today is the International Day of People with a Disability. And it’s essential today, every day, to respect the voices of those who aren’t able-bodied, even if you don’t like what they have to say. Hearing what is being said, rather than speaking for others whose voice may get lost in translation, even if it’s done with the best of intentions, or from a place of compassion and love, is essential for equality.
My private conversations about my health hold pain and darkness and hurt. Occasionally my public ones do too. This year has been shatteringly, mind-numbingly hard for myself and my husband as my primary carer – more so for him, I feel, as he puts up with my nonsense.
To cut a long rant short, I think I, and my mate, are entitled to a little cowboy-inspired levity.
Yet someone who doesn’t know me – doesn’t know my friend either – someone who has no concept of what it is to live with a permanent disability feels it is completely okay to say ‘you must not’ and tag us both with one of the most offensive words possible, and enforce their own belief system to boot. All because we don’t, and won’t, conform to what they want a person with a disability to be.
Well, bad luck, pardner. Because there’s a new Sheriff and her deputy in town. And they’re both wearing kick-arse spurs.
Or they will be. Once they can do the damn things up.
ABOUT KATE
Ambassador Shake It Up Australia Foundation
Experiencing her first symptoms of Early Onset Parkinson’s at just 29, Kate wanted to be involved in doing something proactive as well as raise awareness for the everyday young Australians also living with Parkinson’s.
Having previously worked as an editor and journalist and having the opportunity to interview some incredible visionaries such as LTGEN David Morrison AO, Tracey Spicer, and Rabia Siddique, it was Kate’s interview with Shake It Up Founder Clyde Campbell that gave her the push to truly get involved.
