LAST week, I was mucking around on the Tweet 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 an absolute bitch of a 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. Anyway, as a result of both of us at various times retiring hurt, badly hurt, and horribly, terribly hurt, and in my case being sin-binned for using profanities in public places, our communications are often sporadic, to say the least. Add in being on opposite sides of the world, and sometimes the overlap of messages ends up with very surreal results; although admittedly pain and insomnia and Parky bullshittery assist in keeping the timezone issues minimal.
Aside from his being Descartes-like in terms of intellect, my mate across the seas and I have, fortunately or unfortunately, the same snorty sense of humour. And yes, along with ripping Boris Johnson to pieces (which takes about 22.3 seconds), 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).
A private message from someone I had, I admit, had no interaction with ever, apart from an initial supportive blah about the issue at hand 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.
I was being offensive, they said, to poor handicapped (!!) people. Making jokes about serious issues. It wasn’t Christian, and I should stop. They would pray for us.
At first I thought it was a joke. Because thoughts and prayers, and my well-known tolerance of same. 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!)
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 that bloody 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 - okay, I know what you’re going to say. “It’s you, Kate; it’s not going to be one thing, it’s going to be a list of things, and we’ll be here for an hour”. Fair call, but I’ll attempt to rein it in.
Neither myself, or the Outlaw Josey Descartes, 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, is up to us. Because even though we aren’t defined by our disability, it is our right to define and defy it. And that is the individual prerogative of each and every person with a disability or chronic illness, whether mental, physical or both. As Tuesday December 3 is the International Day of People with a Disability, this might be something to bear in mind.
My private conversations about my health hold pain and darkness and hurt. Occasionally my public ones do too. To put it in blunt terms, I have not been able to think clearly enough to put more than two sentences together for more than eight months, and writing is something that feeds my soul. This year has been shatteringly, mind-numbingly hard for the Man Who Vaguely Resembles David Tennant and myself - more so for him, putting up with and caring for me.
To cut a long rant short, I think I, and my mate the Outlaw, 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 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.
Photo by Hatim Belyamani on Unsplash
