October 1, 2014

Capitol Hill #marchagainsted #edclobbyday

Look, mom! What a view!!
I was honored to represent F.E.A.S.T. yesterday at the US Capital during the MOM March convened by MAED, the on-fire Facebook group that is galvanizing Moms (and others) on the Hill this morning. My remarks, delivered in the Washington sun to a really remarkable group of people, are below.

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.


2 comments:

  1. Laura,
    As always, so wonderfully said. I'm wiping the tears away!
    Jennifer Whisman

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  2. 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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