Once upon a time
there were 4,613 women who belonged to a closed Facebook group focused on BRCA
mutations – previvors, survivors, and others at high risk for HBOC and Lynch Syndrome. The “sisters” – who hail from
around the world – provide incredible support and information to each other, answering
questions, sharing “before,” “after,” and “along-the-way” photos, exchanging surgeons’
names, sending love and hugs daily and all-too-often condolences, and generally
contributing to the unbelievable network that keeps so many of us moving
forward at a time when moving forward the last thing we think we can do.
Everything was
going along swimmingly in our Facebook group until some of our sisters reported other sisters to
Facebook for the mastectomy photos they shared. Yes, reported for the photos they shared in our closed, private, women
only group in which Facebook says it is legal to share mastectomy and
reconstruction photos. Those reported
include sisters who have generously and willingly shared photos to help others
following in their footsteps, as well as those doing the following, whose
photos often show wounds, rashes, and other conditions that usually require a heaping
dose of reassurance more than medical intervention. (Of course, if it is medical attention that’s
needed, the sisters tell it like it is.) Whether leaders or followers, all these women
have been made to feel ashamed, humiliated, and disgraced. No, not by their pictures, but by the
punishments meted out by Facebook – “time outs” and banishment from the site –
at a time in their lives when support and acceptance are critical. Instead,
they’re leaving the group, having lost trust in the rest of their sisters and
been made to feel that what they’ve shared is pornographic when, in fact,
nothing could be further from the truth.
As one of the
group’s administrators asked recently, “How twisted is that?” (Whew, now I’m
caught up on the #BlogExodus prompts! But I digress…)
This same
sister, together with the group’s other administrators, has complained for
nearly a year to Facebook, written repeatedly to Mark Zuckerberg, Sheryl
Sandberg, and Jordan Banks, the head of Facebook in Canada, as well as to the
media, legal, public relations, and investor relations departments. Sadly, no
one has received a response from anyone.
I wish I could
tell you that in the end everything turned out all right and that everyone
lived happily ever after, but alas, that is not the case.
The sisters are eager to have this issue “go viral” in an attempt to
snag the attention of someone – anyone
– who can set this wrong right. If you
know who that might be, please be in touch.
As many of us prepare to retell the story of our people’s exodus from
slavery to freedom (BRCA mutations are present in one in 40 Ashkenazi Jews as
compared to one in about 500 in the general population), it’s a perfect time to
restore the sisters’ freedom to post photos that chronicle our HBOC journeys.
Thanks for your
help.
The End.
Inspired by Ima on (and off) the Bima,
this post is one in a series marking the days of the Jewish month of Nisan
leading up to Passover, which begins at sundown on Friday, April 3,
corresponding to 15 Nisan. If you want to play along, check out this year's
#BlogExodus and #ExodusGram prompts. This series of posts also
is priming my heart, mind, and spirit to participate in a six-day summer
writing seminar, Beyond
Walls: Spiritual Writing at Kenyon.