Did you help save Locky's dad? Or did Autism posts get in the way?.

Nick Auden died on Friday - or Saturday depending on the timezone you live in.

Regardless of where the arbitrary line that states what time of day it is for you, for Nick, 72 hours ago, time became finite.

HIS time ended, and everything that his supporters could do was done.



BUT

Not everything that could be done was achieved.
There were drugs being trialed that could have helped Nick.
Maybe given him some more time with his family.
Maybe even given him a whole life with his family.
They were denied to him on a minor technicality.
He died, perhaps as a result of not having access to said drugs.

I am not trying to tack on to some awful media grief train.
I am not placing this post up and out into the ether in the hope that I can gain a few more extra clicks and thus gain in some macabre popularity contest.

I am writing this because I have a vested interest in Nick's story.

Nick Auden is my wife's cousin.
Not a dim and distant cousin that is at best the relationship attached to the tenuous limbs of a sprawling family tree.
He was her first cousin, the son of her uncle.
They are of similar age.
They spent summer weekends together (along with the rest their siblings).
They lived life all those years ago, as children do. Free of trouble, and worry, and without the concept that things will ever be anything other than what they were in that moment in the Australian sun.

If you aren't up with all the facts of the story you can go to www.savelockysdad.com to catch up.
But if you want to see something truly heart breaking, try this interview from just 23 days ago.
In particular I want you to listen to Amy, Nick's wife.

"All very awful," I hear you say, "but why are you inflicting this on us?"

Because, we failed.

I am not going to get into the whys and wherefores of the motivations of large pharmaceutical companies, or the intimate details of the disease and what the drugs meant to Nick, but to summarise again:
Nick had stage 4 melanoma. There were drugs that had already proved could be helpful to people with his exact disease. He was denied those drugs.

So what do I mean by "we failed"?

How dare I attack you when you were just trying to get through your daily posts, and cat videos, and pithy comments on pastel backgrounds that sum up what your friends think of themselves as people?**

We failed because not enough of us did enough.

Let me explain, and I'll keep the statistics brief:
On my private facebook feed I have 379 friends.
Months ago there was a call out to get as many people as possible to sign a petition that would hopefully influence the Pharmaceutical companies Merck and Bristol-Myers Squibb to rethink their position on whether to supply Nick with the potentially lifesaving drug - PD-1.
I know that at any given time only 16% of my friends list see my posts, it is how facebook works now, so I paid to promote the post to as many on my list as possible, and I think it peaked at around 200 people.

Nine people shared the post.

9.

Nine people.

That doesn't seem like enough, not for a cause that is tangible, and this is why I think we failed.

Elsewhere on my facebook stream, it seemed that people were more than happy to share photos from like-bait sites that stated "It's National Autism/ADHD awareness week. Please share this post to show that you support those struggling with the illness" or something along those lines. I don't take any notice of them, because they are meaningless, and don't actually achieve anything. At all.

To look at the difference in shares, I can count about forty instances of the Autism post in the last week alone - surprising given that it is debatable whether it IS actually autism week in the first place.

Am I saying that Autism and ADHD are not worthy of posting about?

Absolutely not.

What I am saying is that posts like those mentioned above don't actually DO anything for awareness.
They only serve to make an individual feel like they have contributed to something good, and from a more sinister angle - create a situation that allow unscrupulous pages to gain more likes so that they can one day on-sell those pages for profit.

If the cash from these page sales went to funding Autism/ADHD initiatives, then that would be great.
The cash doesn't go there though. It goes directly to the pocket of the likebait site.

I am seeing a similar apathetic response to another friend's call out to help a kid, (whom he actually knows) receive treatment so that the kid can learn to walk. Nolan is a young boy with cerebral palsy, his parents have tried everything and now have come across a treatment that might enable their son to walk. There is a competition that, if Nolan gets enough votes, will give him $5000 toward that treatment.

The parents aren't trying to get enough money to by a house and a luxury car, they just need help finding the cash for treatment is all. $5000 is a lot of treatment. A vote doesn't cost the voter a cent.
And yet, the voting has stalled - because people fail. They fail to see the things that can actually be influenced in lieu of posting items that do nothing other than make the poster look like they are doing something.

So, people will skim over Nolan, for reasons I can't fathom,  but will  bust their finger in an effort to place a starving child on their facebook feed, their mouse screaming under the percussive force of the clicking digit slamming down upon it. Because they are HELPING the starving kid by doing that?

Even when the starving kid photo has been lifted from a news article that is ten years old?

It is an appearance of caring. I find the whole situation sad and frustrating.

Enough, I'm done flogging the apathy horse.

Here is what I am suggesting.
You want to help an organisation?
You feel strongly about the cause that is being suggested on a facebook post?
You actually want to assist the organisations or individuals involved?

Try this.
Search for the organisation's facebook page.
Share the post directly from the organisations actual page.
Sharing from a friends post, only promotes the friend, and has much less chance of the organisation getting any meaningful traction from the post.
If you want to give props to the friend who posted it, add "Thanks for the heads up " to your post.
Rest well that you have actually used social media to do something.

Never before have we been so connected, and yet so disconnected. I understand that people aren't as passionate about this stuff as I am, and I make no apology for that if there are some that feel that I am being unfair.

I'm just asking you to do just a little more if you actually believe in a cause.

It won't cost you a cent.

Final Stats:
In a better facebook world this might have happened.
I put a call out for friends to petition for Nick Auden to get onto the drug trial.
Accepting a diminishing return due to emotional distancing with each step away I have limited this to 5 steps of connection.
50 shares from me.
20 shares from those people's contacts
15 in the third step away.
8 (because there is significant distance from the subject now)
4 in the last step.

480,000 people.
Just from me as a starting point, and I have neither a massive list, or a small one.

Nick's petition site, with all of the media and all of the sharing... 514,000 - total.

We could have made a difference - but  like-bait sites say it's Autism week, apparently.

On a personal note:
To Amy and your little family, and the greater mass of Audens and ancillary relatives, I am so very very sorry for you all. Karma will send her own message, and so I will not presume to speak for her, but just know that we are thinking of you.

I'm also sorry that I didn't get to meet Nick personally. He strikes me as a great man and father, and all around good guy.

Andrew.



References:
Help out Nolan if you have the chance: http://sunsuperdreams.com.au/dreams/user/julianna-adcock
More on Nick's fight: http://www.savelockysdad.com/
Think you've got a hoax on your hands? Check ANYTHING that you think might not be genuine:
http://www.hoax-slayer.com
http://www.snopes.com/
Genuine Autism facebook sites:
http://www.facebook.com/AutismAwarenessPage
http://www.facebook.com/AutismSpectrumAustralia
Feeling charitable?
https://www.facebook.com/kiva
https://www.facebook.com/redcross
http://www.facebook.com/ShamidaChildrensHome

**I'm not saying that facebook needs to be entirely worthy and deep. I mean, who doesn't like a fluffy cat video or hilarious quote. I am suggesting that while facebook can be entertaining 97% of the time, for 3% of the time it can actually DO something good.
(see what I did there with the "97, 3", thing? Hey. HEY?)

6 comments:

  1. "I know that at any given time only 16% of my friends list see my posts, it is how facebook works now, so I paid to promote the post to as many on my list as possible, and I think it peaked at around 200 people. Nine people shared the post."

    So, because you paid to promote the post and only nine people shared it you're blaming the world for Nick's death?

    This is ridiculous. You're a drama queen. You should have done more. You should EMAILED your 379 friends and asked them to sign the petition and asked them to send it to at least 20 more of THEIR friends.

    You should have brought it to your office and passed around the link so that people could sign the petition.

    You could have stood at the supermarket and passed out flyers.

    I'm truly sorry for the loss of your wife's cousin Nick. Condolences to your entire family.

    These are just a few examples of what more you could have done but didn't. Don't blame the world. Blame yourself for not doing more to help your wife's cousin get the medication he needs by drawing more attention to the issue with big pharma.

    ReplyDelete
    Replies
    1. Seriously? The sentiment of Andrew's post is loud and clear.

      He's hurting. His wife is hurting. He needed the power of social media to support a just cause, and it failed him. Facebook users could have done more to help. His wife's cousin has died too young.

      Your reply smacks of guilt and mean spirited rudeness.

      And you didn't even have the balls to put your name to it.

      Delete
  2. If you'd spent just half the time it took you to write this blog post and devoted it to helping Nick out, I bet you would have made a real difference.

    ReplyDelete
  3. I am astounded that anyone writes 'you could have done more'. Perhaps the point of this article was not to criticise those who failed Nick and his family (the author's friends who failed to share / sign the petition) but the frustration at the 'system'. If someone is dying, surely treatment trials are worth a go (or am I missing something; the fact that a potentially life saving drug cannot be tested on a dying man due to medical grounds because it might damage his health).
    The system failed Nick and his family. Being in the position of knowing that something could have been done, but wasn't, yet reading constantly 'Show your support and share this picture of a cat / ribbon / mouse / whatever' must be heart breaking.
    I am angered that people are using this article and trying to turn the guilt on the author! "If you'd spend just half the time...." OK then, because that is really helpful. I think you've just missed the point completely, which was, if I am not mistaken, the entire point of the article.

    ReplyDelete
  4. Its like you didn't read the article. The point of this article is PRECISELY to criticise we who failed Nick and his family. It barely mentions the system.

    So in criticising us, the author also opens himself to criticism. He could have done a better job in promoting his cause.

    ReplyDelete
  5. Thanks for your comments.
    It's taken a while for me to get around to replying, as you are no doubt aware that the life of a Drama Queen is an overly complicated one, and one that I have brought upon myself... so with all the fretting and constant machinating on how I can gain the planet's approval, sometimes replying to such insightful prose can take a back seat.

    You are right in your assertions though, I didn't do enough - but I am not alone in my laziness.

    Of course your hypothesis that I only hit promote and then pushed myself away from the computer wouldn't hold up to any great scrutiny had I documented my progress, but unfortunately I neglected to create a spreadsheet of activities; and getting such a spreadsheet notarised by a government official in a quest to have it validated is a ball-ache... and it gets in the way of my fretting.

    For all of that I still maintain that not enough was done even though half a million people did take the time to sign the petition (if you were one of them, thanks for helping out)

    514,000, while a significant number, is far less than what could have been.

    The Australian Today Show alone averages about 360,00 veiwers, Hawthorn football club has 60 odd thousand members, and countless supporters.
    Ricky Gervais and Sarah Silverman share 10,000,000 (not a typo, I meant ten million) followers between them.

    And that is without facebook and the potential that it has, given that it is one of the "Social Media" heavy-weights.

    So, my post was levelled directly at the state of play within facebook itself - and the frustration I feel when few people share and interact with something tangible, yet will happily post offensive material in the belief that they are doing some kind of good for the subject in a random photo.

    Offensive?
    I am offended by images that say something about a subject, and portray it in a manner that suggests that by viewing it, something good will come from it.

    I am offended that there are companies who prey on this deluded belief that slackvitists have, by accruing them to their pages and then selling those pages, with their "like" cattle in tact.

    I am offended that many people actually do things, and give of their time, and money, and tears, yet bogus posts gain so much traction... while worthy causes are overlooked.

    I think the post clearly states that, and thankfully masks the rage that I felt - particularly when much of the family heard about Nick's death via facebook (Oh the irony).

    Yet, the rush to share the tragedy was immense.

    There is no way that I can get the numbers, but I am guessing that the share rate in death will be greater than the share rate to try and keep him alive.
    Still, 500,000 people is a lot, but the weight of 1.5 million might, MIGHT have tipped the scales for even more coverage, or more influence by more influential people.

    It's the not knowing if it would have made a difference.

    And the knowing that, right now, there is a likebait post on my timeline.

    And I'm fretting about it.
    Also regarding efforts on this post as lost time for Nick: I'm sure that the poor editing of the original post demonstrates that it was written quickly... about 20 minutes there, half that time is 10.
    I would have loved to have had another ten minutes to make a real difference while Nick was alive, alas this was written post-mortem... would love to borrow a time machine if you have one available, I'd pick up those 10 minutes and take them back with me, and hand them to his wife as a gift.

    ReplyDelete

A.T.H Webber is an Australian writer and blogger living as an ex-pat in the United Arab Emirates.

His first novel, "Erasure" is fresh from the quarter-finals of the Amazon Breakthrough Awards and is now available to borrow from the Kindle Prime lending library.

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