Tuesday, January 21, 2014

Disability, Medical Ethics, and Embracing it All

Today I'm posting, in part, in the T-21 blog hop to raise awareness about Down syndrome.  Related to that, I've been thinking a lot lately about - how to phrase it - the lack of equity in the medical treatment of people with disabilities.  Check yesterday's post for my musings on it.  It's not just medical treatment I'm thinking about - the Ethan Saylor case is an example of a crying need for better training for law enforcement workers.  But as long as the disabled, particularly those with mental disabilities, are ever-so-subtly denied the same treatment as the rest of us, there is a need for more vocal advocacy.  I'm not really an activist, but the thought of how vulnerable my own child could be in so many situations is sobering.

The central issue for me: do doctors give the same quality of care to a person with a perceived mental handicap as they give to a person with "normal" brain function?

Embracing Quincy, Our Journey Together was the first book I read on my new Amazon Kindle. It was free for a few days after Christmas when I was poking around, and it immediately resonated as something I would want to read, even though I knew it would be a heart-wrenching book.  It's the story of a family whose unborn daughter is diagnosed with one of the most frightening of genetic disorders - Trisomy 18.  As the author states, medical treatment for Trisomy 18 is currently where Down syndrome was in the 1950's.  Children born with the condition rarely survive for long, and when they do, it's because of the passionate advocacy and tireless devotion of their parents.  As the parent of a child with Down syndrome, I feel like my life is one of ease and luxury by comparison, and my daughter's condition is a walk in the park.  But for anyone who cares for a disabled person, and especially for neonatologists and doctors who deal with high-risk pregnancies, I'd recommend this book as a snapshot of how one family perceived the medical establishment and its treatment of their child.

It's a disjointed read, with a lot of flashbacks and more or less unrelated stories, but it is sweetly written for all that.  The author is what I would describe as a New Agey flake -- she tries to visualize her unborn child to better health, she practices meditation and has psychic readings, she muses about her own personal history and how it fits into the cosmos.  Having had one abortion, she turns down the doctors when they urge termination in this case.  She seems to put equal faith in the name-it-and-claim-it theology of some charismatic Christians and the occult philosophy of the "law of attraction."  As head-shaking and bizarre as I personally found some parts of this memoir, none of that should matter.  The medical community failed her and her daughter at a point when they were most vulnerable, and there was a decided lack of basic human compassion in their treatment of her.  This shouldn't happen.  Period.  No matter what you think of the religious beliefs or lifestyle of the parents.  And compassion, given regardless of diagnosis, would be the best place to start in every case, I think.

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