Who says patience is a virtue?
I do not want to start an internecine theological dispute. But the possibility that to be patient does not necessarily mean you are virtuous crossed my mind earlier today because a long wait comes to an end for me tomorrow. Monday, 26 August 2019.
Or maybe it’s not an end. Maybe it's simply another new start. The beginning of the end of a very long wait that in my case covers decades – I really do mean decades – of political agitation, organisation and action alongside countless others to force a resistant world to make changes to ways in which society regards people with disability.
Like many others I have been part of a persistent movement of activists campaigning (vigorously at times) to change the ways in which we are understood, included and supported (or not). We've worked together to change social policy, public spending priorities and taxation arrangements so that -- seemingly -- despite the decades of institutional resistance to our ideas of a rights-based framework of social justice for people with disability – most people now think of it as the new normal.
If they think about it at all.
Our need to campaign isn't over yet, of course. There are still too many discriminatory barriers for us to chip away at until they too are pulled down and brought to an end. But for me -- after a campaigning journey that started over thirty years ago (check out the Lothian Centre for Inclusive Living here) -- a minor, personal milestone has arrived.
Hip, hip, hooray.
Tomorrow I have my initial planning meeting to begin the process of developing my first NDIS plan. I know, I know ... wasn't it 7 years ago, Dougie, that you moved to Canberra to join the NDIA team that launched the NDIS? Yes it was Douglas. Now STFU.
After much delay – some of which I have previously written was my fault -- I submitted my NDIS access request on 7 January 2019 along with the required evidence that I am indeed a C6 quadriplegic, paralysed from the chest down and in all four limbs; no triceps or finger function. Those details matter when you’re a quad. Trust me.
More than 5 months later I sort-of received confirmation from the National Disability Insurance Agency that my access request had been approved on 18 June. But I had to phone them several times to find out. And only after more than another 2 months had gone by did I finally receive a date for an initial meeting to discuss my first plan. Who knows why? But I had to phone them several times about that too.
So --- almost 8 months after I formally submitted my access request and evidence I am about to have my first NDIS planning meeting. Even the newly appointed Federal Minister for the NDIS, Stuart Robert MP, was quoted recently on radio saying such delays were – and I quote directly – “unacceptable”.
So -- who says patience is a virtue?
Turns out the answer might be a guy called Aurilius Clemens Prudentius who wrote in the fifth Century a poem called Psychomachia in which the personification of the virtue Patience fends off Anger by means of her fortitude. Anger loses-it then kills herself. As you might, if you had to wait a long time for something you thought was both reasonable and necessary -- like your first NDIS planning meeting.
Or it might have been Pope Gregory. He listed the seven deadly vices in 590 AD against which the seven virtues – chastity, temperance, charity, diligence, patience, kindness and humility – are arrayed.
But what does Pope Gregory know, to be frank?
First, he’s been dead for over 1,400 years and time moved more slowly back in the good old days. And second, Pope Gregory never had to fill out an NDIS access request form then wait almost 8 months before the first human to human conversation takes place about whether or not this quadriplegic needs a new wheelchair or not.
(He does by the way).
For what it’s worth, I am not persuaded that patience is a virtue. It's a necessity.
My 35 years of experience tells me that for almost every person with disability on the planet, patience is not a virtue but a skill one needs to learn. Or a self-actualising state of grace one must acquire with all the placid acceptance and selfless denial of a Zen Buddhist Master. And that's a challenge for a man like me because I have an ego the size of Brazil and the same ability to delay gratification as a sex-crazed gnat. Which tells you I lack at least three of the seven, aforementioned sacred virtues.
Patience isn't a virtue but we are made to wait and wait and wait and wait and wait and wait and wait. Just like you were waiting for that sentence to end. Except much longer.
Which is why – while you’re waiting for an answer or waiting, waiting, waiting for …
a budget approval,
an escalation of your umpteenth phone enquiry by the NDIS national call centre,
an NDIS review,
a light touch review (whatever -- in the name of the wee man -- that’s supposed to mean),
a review of a reviewable decision,
a hearing at the Administrative Appeals Tribunal,
an NDIS plan that meets your reasonable and necessary support requirements;
you can take your pick of any one of those or the many other reasons thousands and thousands of people with disability – right now -- are waiting for periods the Minister for the NDIS calls “unacceptable”. And because we are made to wait and wait and wait there are other – no less virtuous -- skills we are forced to acquire.
So … at the risk of making even more of a pompous ass of myself than usual ... here is one of Dougie’s periodic and intemperate lists of skills intended to maximise choice and control over your reasonable and necessary supports within a rights-based framework for being a human:
(As Shakespeare put in the mouth of Lord Polonius) “to thine own self be true”, but
Do not try to change the world all on your own (it’s bigger than all of us) -- but absolutely, irrevocably, without hesitation or regret do change the world for good;
Educate, agitate, organise;
Act with urgency (but not impatiently) cos we’re all a long time dead;
Never give in (but know when you’re wrong and learn from your mistakes – cos we all make them);
Listen to and learn from people around you – pay particular attention to those with whom you disagree and not simply for tactical reasons (they might be right);
Sometimes it’s necessary to be unreasonable but it's usually quicker, better, more effective and longer lasting when you work alongside others in progressive alliances committed to non-discriminatory shared objectives and inclusive outcomes.
But what would I know? I’ve been waiting 8 months just to have a meaningful conversation about incontinence supplies, home modifications, assistance with getting out of bed in the morning, and all those other aids to daily living, improved health and well-being and capacity building enablers that'll be included in my first plan.
Don’t you just love the jargon we have to learn? So we can speak NDIS. Like it was French or Japanese or something.
That was intemperate and impatient of me. Pope Gregory would be disappointed. Aurilius Clemens Prudentius would turn in his Roman grave.