The summary of our visit to the geneticists is on hold while
I address a topic only peripherally related to C. and her disabilities. But it is
relevant to blogging about medical tragedies in general (and, yes, I do consider raising a
child with profound impairments a tragedy). It's also a topic that has
dominated the blog- and Twitter-sphere as well as major media outlets in the
past week. So I'll weigh in.
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| Her blog is here |
Camouflaged as discussions of timely
social "issues", the two pieces mercilessly deride what
blogger/tweeter Lisa Bonchek Adams does.
To begin, in Bill Keller's words, Adams
doesn't write; she "pecks". He proceeds to insinuate that the
hospital treating her is rewarding the publicity she generates for them with
"amenities" (he means her treatment), saying "Neither Adams
nor Sloan-Kettering would tell me what all this costs or whether it is covered
by insurance." He belittles the hospital's Caring Canines program
and queries its cost. (Fact: it's provided by volunteers but why should that matter?)
Finally, he contrasts Adams' fight to survive via a series of expensive
treatments with the case of his elderly father-in-law who opted solely for
palliative care, and then "died calmly" in a more "humane
and honorable" - and obviously cheaper - manner.
In her article, his wife, Emma Gilbey Keller,
wonders if Adams' tweet tally is “a grim equivalent of deathbed selfies”;
accuses her of "dying out loud"; wonders "is this
TMI?" and questions the "ethics" of it all.
I've been following Adams ever since her
blog was cited in a March
2013 New York Times Motherlode feature. Her sensitivity and empathy coupled
with candid but eloquent writing were captivating.
I first shared my blogger
"friend" (I have never even sent her a comment) a few weeks ago after
she received a shocking anonymous comment. It criticized Adams'
"clinical" posts about her terminal illness and its treatments and
exhorted her to stick to poetry (at which she excels, by the way). She actually
responded civilly to the creep.
But then last week, while she has been
tweeting and blogging about the extremely painful period she is currently
enduring in hospital, those two ballistic columns appeared.
Ms Adams tweeted that she was
"stunned" and "saddened".
.@emmagkeller many inaccuracies. I'm quite perplexed and concerned. Misses everything I'm trying to do. Stunned. Saddened.
— Lisa Bonchek Adams (@AdamsLisa) January 8, 2014
Soon, however, an avalanche of backlash
cascaded from just about every media outlet in the world. Support for Adams has
been staunch and effusive. Needless to say her Twitter following
has skyrocketed.
I imagine that any honest, detailed
account of "unsavory" medical cases could inspire the same cringing
and, yes, loathing that the Kellers apparently feel for Adam's blog and tweets.
Also the expenditure of caring for those with profound disabilities would
probably not sit well with those, like the Kellers, who favor cutting medical
costs when a cure is improbable.
So in a sense any of us who invest in
questionable treatments and share our personal challenges too prolifically for
the taste of some others are in the firing line.
To clarify, this blog serves a
threefold purpose for me. It is a place to
- Vent about the injustices and incompetence rampant in the medical and educational systems so we can just feel a bit better
- Share the insights and knowledge we have gained over eighteen years raising C. with other parents.
- Enlighten the wider public about the needs of children with profound disabilities.
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