Everyone is a critic

By Terrible Palsy – cross posted at Terrible Palsy.

I first heard about Darius Goes West over at Chewing the Fat. I love Dave’s blog and have read all the crap leveled at him by other disability advocates.

Reading his blog a couple of months ago, I suddenly “got” Dave. Sure, he delivers inspirational story after story but I think that there is very much a place for him in this world for his type of advocacy. We don’t all have the same approach to advocacy, but is any way less right than the other? There is a diverse range of advocates out there – Cilla, Kay Olson, Penny Richards, David, Kathryn, Jodi, ATM to name a few. Each one I carefully listen to their views even though I don’t always agree with them.

Watching the shorts for Darius Goes West, I felt that I was prepared to give it a go despite hearing that dreaded “suffering” word. I ordered my copy and it arrived earlier this week.

I loved it. Darius, you are a hero. And Logan, you have done a fantastic job. The film not only address MD but talks about the ADA and accessibility as well as the job of carers. It does this by appealing to the masses. Maybe, the film isn’t 100% politically correct but I don’t think that is the point, is it?

At around about the same time I watched this film, I read discussion about cut-off dates for resuscitating extreme and micro-preemies. The debate re-ignites every now and again as we all hear the same arguments over and over again. But it also serves to re-ignite the confusion that I hold within myself.

See, I agree with the cut-off dates – currently at 23 weeks, depending upon the appearance and response of the child. I lived with the cut-off dates and it affected my pregnancy with Moo. Reading the comments and feeling the tears well up in my eyes made me realise how deeply this did affect me even though it occurred now almost 4 years ago.

I wonder how – with my beliefs that there is a point where you have to let nature take it’s course . . . that not everyone who can be saved by medical science, should be saved . . . that some interventions without pain relief are nothing short of cruel . . and that the ultimate decision regarding resuscitation should be made by the parents – whether I deserve to call myself an advocate for disability issues.

Is there a place in the world for me? Do I have a right to force my views upon this world?

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3 Comments

Filed under terriblepalsy

3 responses to “Everyone is a critic

  1. Fiona

    I feel I can’t comment on the cut-off dates debate, as my boy was a full-term baby with Apgars 9, 10 and probably also a widespread brain injury. I don’t know what I would have done or felt if he were premature. But I am absolutely certain that children who survive – by whatever means – who need and whose families need support to maximise their abilities and quality of life should get it, regardless of cost, in a 1st world country. If cost is the reason for not supplying support, the govt/agency should say so openly, so the community understands exactly why families of children with disabilities – in Australia – undergo such extreme financial, physical and emotional stress.

  2. Thanks for the shout out. Please encourage your readers to vote for Darius Goes West in the Chase Community Challenge. It’s fast, it’s free, and we could win $25k or more for research. Here’s the link: http://apps.facebook.com/chasecommunitygiving/charities/233495

    Happy holidays from Darius and the crew!

    Best,

    Logan

  3. The larder came at about the same time at first far too big but nonetheless poorly lighted and ventilated.

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