Sunday, January 15, 2012

Photo A Day - Day 15

Today's photo is of Ashlea - enjoying one of life's simple pleasures - sliding down a slippery dip.

I chose this photo for today because it shows Ashlea having fun - enjoying life, playing, generally having a good time.

Enjoying her life.

I chose this picture because over the last few days there has been an internet outcry over the case of a young girl with an intellectual disability whose parents were told she was not suitable to receive a kidney transplant because of her 'mental retardation' and 'poor quality of life'.  You can read the parents story here.

I was infuriated when I read how the family were treated and how the doctors dismissed their child as someone with no quality of life and therefore not deserving of a transplant.  Why some people assume that just because a person has a disability (or even multiple disabilities) has no quality of life never ceases to amaze me.  There is no denying that they have a 'different' life than so called 'normal' people, but that doesn't mean it is automatically bad.

I was also terrified when I read the article because there is part of me that worries that one day Ashlea will come up against a doctor like that.  I wonder if she were on the public waiting list for a kidney if the issue of 'who is more deserving' of receiving an organ would arise.

We have had the 'We need to talk about what is best for Ashlea' discussion with her doctors, but thankfully none of them have ever implied that she shouldn't have a transplant.  I do worry though that if she weren't receiving a kidney from a family member that it might come into play. Would a panel of 'experts' who had never met Ashlea look at her and based on her 'on paper' description decide that she was less deserving of an organ than someone who is able to go on and 'contribute' to society.  As if only people who 'make a contribution' are valuable.

It is such a difficult issue.  Are the doctors playing God in denying this child an organ?  Are we playing God by insisting that Ashlea gets an organ?  What a minefield.

What I do know is that Ashlea would die without a new kidney.  I believe she has a good quality of life - definitely good enough for us to put her through a transplant to ensure it continues.  I hope and pray for this girl's family that they are able to find a doctor that will give their child the treatment she needs.

There is a petition you can sign here if you're interested and as always a great post on the issue from Ellen at Love That Max here.


Sarah said...

I was shocked to hear of this too!

Why should doctors make assumptions when they dont know the child...quality of life is evident in all my friends who have severely disabled children.

Sarah said...

Forgot to add, i love this photo!

Lacey said...

When I heard this story, I immediately thought of you! What upsets me is this is the number one childrens hospital in America for years. Stand up to that title! I can't help but think that is an old man with the old man thinking. They used to institutionalized disabled kids back in the day! Get with the times old man!

Anna said...

Thanks for blogging about little Mia. It is such an awful thing to be happening. I am loving all your photos too. One of Ryley's fave things to do is go down his slide too.

Shasta said...

Thanks for sharing your link on my blog. I'm so glad your doctors never suggested anything like that!
I hope (hope, hope) that this is some sort of weird fluke. And it's possible the mother isn't giving us the whole story. But it's still scary.

Shasta said...

P.S. Any chance I can get on your blogroll? I'll make sure you're on mine right now.