Summer 2011 #6
Astride Buggers 2 & 4, Little One and I were indulging in a late afternoon round of a favourite game: Powerchair Tip. On this particular day a couple of teenage kids were riding mountain bikes on the steep hillside across from our home, and we were no sooner down our drive than Little One volubly commanded them to get of “our” hill, which is, in point of fact, a council reserve. With a little careful persuasion she recanted, shouting with equal authority that they were now welcome to stay. It’s important to the story for you to know that the boys were fifty yards away, and might not have heard us, even if they hadn’t been oblivious to our presence. But, they were heading our way! Nothing gives Little One more pleasure that befriending complete strangers and she obviously considered the bond to have been sealed, because as soon as they reached the road she was there to greet them with High Fives. I tried to protect them from her onslaught of affection … a complete waste of effort.
It’s important to the story that you are acquainted with a couple more details. One is that my ten-year old has Down syndrome, and understanding her speech is tricky, to say the least. Another is that she sits cross-legged when driving B2, which is a sight to behold. Yet another is that even with the amplifier mounted on B4 my own voice is increasingly faint. So here’s the picture: two people on power chairs, one young, one old(ish); one vociferous but unintelligible, one articulate but inaudible; and two healthy young blokes on bikes. When Little One challenged them to a race their faces wore an expression of fixed, if polite, bewilderment. I reckon they were good young fellows, and they soon made a courteous escape. But it makes you wonder doesn’t it? What in the world did they make of us? What did they say to each other on the way home, and how did they describe the strange occupants of the house on the hill to their mates?
I witnessed the opposite reaction several months ago as a passenger on a coach. We had climbed the scenic Macquarie Pass south of Wollongong, and were passing through the string of quaint townships that nestle in the southern highlands. I happened to be looking out my window just as our driver gave the air horn two solid blasts – purposeful, cheerful peals – and I was rewarded by the sight of a couple of dozen people on the shady veranda of a rather nice pub, holding their drinks aloft and cheering in salute. Ned, our driver, flicked on the tannoy to offer his passengers a succinct, two-word explanation of this baffling greeting from the gallery: “My Local!” I had already taken a liking to Ned, and could understand the enthusiasm of his friends at the Pub. Ned was the authentic, likeable Aussie bloke. Popular, gregarious, reliable; exuding an understated confidence, he was a warm spirited, knockabout larrikin. The sort of fellow you feel you’ve known forever. Ned was a strong, solid man, with sparkling eyes and a beard to match his name.
Appearance is a funny thing. The world makes much of it; indeed a fair slice of the global economy is generated by our relentless pursuit of public approval. I think I’ve probably claimed to be disinterested in such things; but deep down I know I’m as vulnerable as the next guy. That’s why I found the shop-window reflection of myself driving B4 away from the supplier’s showroom so frightfully alien. It certainly wasn’t the image of myself that I had nurtured all these years!
“Not normal!” is a schoolyard taunt, offered to intimidate all who fail to fit the mould. But it’s a weak threat; a non-statement. It sounds tough, but delivers nothing; because normality is simply maths, nothing more. It’s a bogey man. Who on the planet is actually ‘normal’, for goodness sake?
Nonetheless, I want to know this: Can the gradual stripping away of so called ‘normal’ appearance give us the opportunity to live more authentically? I’ve always liked Isaiah’s prophetic description of the Messiah: “He had no beauty or majesty to attract us to him, nothing in his appearance that we should desire him”. Can the process of reduction – which happens to us all, whether by infirmity, injury or age –reveal integrity closer to the core of our being? Can the process of disabling help us to truly be, rather than just to appear? Esse quam videri, or is that too simple? Are we too human for that?
What do you think?
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Esse quam videri: to be, rather than to appear. Virtute enim ipsa non tam multi praediti esse quam videri volunt (Few are those who wish to be endowed with virtue rather than to seem so). From Cicero’s De Amiciti (C 44BC).
Rejoice! 
Thanks again Roderick, I have to agree that it is more important to be authentic and real rather than appearing to be something that we are not.The spirit is the real”me”inside the box we call our body.Thanks to the holy spirit we can rejoice in who we are and what situation we find ourselves in. Kathleen
Another very interesting post, Roderick. Appearances do bring snap judgments, don’t they? And seeing ourselves change so drastically is disturbing…it gives the ego a jolt. Maybe a good thing, though. I’ve had people tell me “You look great!”, and also, “You look awful!” I don’t keep any mirrors around where I’d normally see myself, so it’s usually the photograph that is so shocking to me (Yes; the “awful” comment is the true one). But whether the erosion of the outward is part of the equation or not, I find that true, soul to soul conversation makes the bulk of my interaction now… and that is due to reality rising over the mundane helped by a failing voice. Truly being is helped by disabling, in my experience. Thanks for your thoughtful blog. Ann
Dear Friend,
Thanks for your words, for you have hit the root of what i fear the most as my ALS progresses: not to be recognized as who I really am beneath the outside shell…the thought that this process of being stripped could actually bring us to a more authenic place within ourselves is astonishing. ALS takes away parts of ourselves piece by piece, exteriorly. We will be counted among those to be pitied at best, and ignored or discarded as worthless by most. Have we journeyed to the Kingdom within that Jesus speaks of…are we truely Blessed as the poor, the hungry and thirsty for justice, the stranger, the mourner, the peacemaker,the persecuted…leading to the Pure of Heart who will see God face to face?
We all cringe at the stripping of human dignity by others who do not know us, cannot see or hear us. But these are the citizens of the “Kingdom not of this world”, the anawim, the little ones, like your beloved daughter…oh that we could be like her, not self conscious of being different, but going out to others in total trust, not in them, but in the preciousness of being a true child of God. Thank you for your thoughts. Let us pray for one another that we be transformed interiorly to this purity of heart, asd we ae stripped of what is superficial.
And you for your thoughtful reply Ann! I’m always interested in your experiences and your perspective. Mirrors are a wory arent they! Isn’t there a parable or fable about someone who won’t have a mirror in the house?
R.
Yes, that we can Kathleen.
Hello Sharon,
Thank you for your repsonse. What you say about being “recognised as who I really am beneath the outside shell” is a challenge for everyone: for those whose shells are wearing away, and for those who have to learn to look a little deeper than what simply meets the eye. It’s just life really, isn’t it?