07 April 2013

"Are you at peace with your decision?" Amanda Baggs' story of survival in hospital

Amanda Baggs is an autistic woman, and an autistic rights activist. Recently she has been very ill, and has been hospitalised. The seriousness of her illness has meant that she has needed a feeding tube to ensure her survival, but instead of automatically going to all lengths to keep her alive, doctors have tried to talk her out of her feeding tube -- out of living -- because of her perceived quality of life issues due to her autism.

Amanda has had to fight tooth and nail to get that feeding tube into her stomach. And then, just before she had it inserted, she was repeatedly asked if she was at peace with her decision. The fury that question brings up in me is difficult to express. Imagine being the person who is being asked. At peace with her decision to live??! Of course she was!

Her plight highlights a hidden prejudice, a devaluing of the lives of people with disabilities in the medical system. Amanda expresses her situation much better than me, so go ahead and read her material to find out more.

"Are you at peace with your decision?" <-- Click

I have triumphed over the damn nasogastric tube. It will never scare me anymore. The last one scared the shit out of me because it was done barely with my consent and it was huge and my nose and throat are both tiny so it was like a giant rod keeping me from swallowing and making me gag all the time. I am so happy though because I will never be scared of this again. It&#8217;s not even all that bad. I&#8217;ll have it until partway through the procedure to place the gastrojejunostomy tube and then they will remove it while I&#8217;m asleep,sparing me the gagging and retching. I&#8217;m absurdly happy how easy this was.

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