Capitol Hill #marchagainsted #edclobbyday
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Look, mom! What a view!! |
In a world where virtual and on site advocacy meld, the event was Instagrammed and tweeted in real time and a very cool virtual march attendance gathered by Leah Dean at F.E.A.S.T. HQ that gathered families from all over the world in real time as well.
Now, today, the Eating Disorders Coalition and the Alliance for Eating Disorders and MAED are collaborating again to train and mobilize citizens to lobby for the FREED Act and eating disorders awareness all over the Capital. If you are reading this you are probably not there and so, like me, can participate in VIRTUAL LOBBY DAY.
If you think your participation won't matter, you're wrong. If you have ever thought "why don't people know about and care about eating disorders" then you must know that whether you lend a hand when you can is the reason. If it doesn't matter to US when the opportunity arrives to raise your hand why should it to policymakers and the public and journalists?
The ghost of Parents Future
September 30, 2014
Laura Collins Lyster-Mensh
I am today the ghost of parents past.
Guilt-ridden, hidden, and contrite. We listened in
terror but were afraid to speak. Ours was a March of worried
deference. We heard that our beloved children were damaged irrevocably, that we
had failed to protect them or even that we were the perpetrators of unspeakable
and un-parental crimes. We went from seer to seer, promise to promise, cure to
promised cure. We grabbed at hope, clawed at one another, always willing to do
one more thing, one more promise.
We hid our names, covered our shame, accepted our
penance.
We were left out of the room, sent away from the
table, set to tasks that kept us at an arm’s length and still, we were
grateful. We were hopeful even without a plan. We were willing without a role.
Until there was no more hope, often, or, exhausted we watched our children
recover from a distance.
Over time, over MY short ten years down this rabbit
hole, more parents awakened to a newer view. Sometimes invited and sometimes
protesting, we were told we need not hide and should not sit back.
We learned about not only hope, but the specific hope that OUR
role as parents makes possible. More of us began to join the treatment team,
join advocacy, to take our place in supporting our loved ones toward recovery,
to healing our families, to sharing information and science and support –
openly, joyfully, with optimism and even, at times, humor.
This is an awakening that happened and inspired us
from other parent circles. MADD, NAMI, autism circles, many areas of child
health have been revolutionized by parents who took their place not just in the
examining room but in board rooms and here, in Washington.
Many years ago, when I was still just an individual mom
on an unwelcomed mission to change how parents were viewed in eating disorder treatment,
I had the opportunity to interview Dr. Thomas Insel, the head of the NIMH and
arguably the top psychiatric expert in the world. He told me that eating
disorder research and eating disorder treatment would not progress unless and
until parents stood up and took their place to make it happen.
That was when I and others gathered the loose
coalition of parents out there and created the first international organization
of parents of eating disorder patients – many of you here were there and helped
make that happen. F.E.A.S.T. was the result: a vibrant network of many thousands of families around the
world acting in their homes and in their communities and countries to share
evidence-based information and support.
I am the ghost of parents now.
Only a ghost, as I have retired from my ten years of
rabble-rousing and turned over the advocacy to the next generation of parents.
These parents use their real names. They get things done. They carry pictures of their loved ones
with pride and admiration, with optimism and without pity. They expect and
sometimes demand change and accountability. They carry the banner of science,
not contrition. They are vocal, and their emotions are those of any parent
faced with serious illness in a son or daughter. They take their place with
other advocates, other movements, other marches, and they do so collaboratively
and looking to the future and not the past.
I am the ghost of parents future.
Some will remember this day, here, where we are.
Some will count it as the day that defined a new era. Some will mark it as the
day they set a course – in their own home and in our nation’s home – for
genuine and lasting change.
In the future, too, will be countless families who,
because of what you do now and tomorrow in the halls of Congress, who will not
remember this day. They will never know who had to show up and speak up to make
sure that their loved one lives in a country where an eating disorder is
recognized early, treated appropriately, and the family and community are
supports and not frightened bystanders. They may have the luxury of never suffering
the isolation, the confusion, the self-doubt, and the family-dissolving
potential of an eating disorder diagnosis.
They may not ever know, but we do, we will, and we will
not rest without that future assured.
Laura,
ReplyDeleteAs always, so wonderfully said. I'm wiping the tears away!
Jennifer Whisman
Thank you Laura - as a relative newcomer to this arena, I feel enormously grateful for the foundation you have laid for me, and the rest of the new generation of ED advocates. We desperately hope to make you proud as you watch us propel forward to fulfill our visions of what the future must hold. Onward...
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