Page 8 - HFA_Dateline_2018_Q1_Spring

Now What? Maintaining Momentum
after HFA’s Young Adult Advocacy Summit

By Catherine Anderson, Introduction by Sarah Shinkman

HFA hosted our inaugural Young Adult Advocacy Summit this past October. Fifteen young adults with bleeding disorders
from across the country participated in the four-day event in Washington, DC and received training on state and
federal policy, advocacy, coalition building, communications, and health insurance. One of the participants, Catherine Anderson,
shares more on her experience and its lasting impact.

L iving with a rare condition means that I often have to act as ery person who has ever been disabled by their unmanageable
the expert on my condition. As I deal with everyone from menstrual bleeding. Last but not least, legislative officials have
curious strangers to overwhelmed physicians, it is important an obligation to work for the wellbeing of their constituents. If
to me to know what is happening in my body and be able to anyone should be intimidated during those meetings, it’s them!
explain this to others. However, I have often found myself trail- The Young Adult Advocacy Summit empowered me to shift my
ing off into a long description of the many ways my life is af- message from one of feeling like a victim to one of agency and
fected, when the listener was anticipating a simple explanation. use that to advocate for a better life for our community.
As therapeutic as it can
be to speak openly about Part of the reason the
my condition, I have been Summit was so transfor-
embarrassed by my ten- mative for me was that
dency to overshare. Even it focused on people in
worse, I fear being seen as my age group. As young
a chronic complainer. adults, we were mostly
concerned about the
During the Young Adult same things: avoiding
Advocacy Summit, I was bleeds, finding mean-
encouraged to develop an ingful work, establish-
“elevator speech-” a con- ing relationships, fur-
cise personal statement thering education, and
about my life with a bleed- how the current discus-
ing disorder. By work-
shopping my speech with sion of access to health-
groupmates, I was able to care will impact our
focus on the big picture lives. I feel liberated
of my life, rather than naming the many details. Hearing the having a group of peers
stories of my peers also helped me to realize how I can use my who already understand this central element of my life.
voice to speak for our community as a whole.
I am reassured knowing that I am not alone in my chronic joint
We put our speeches to the test by meeting with members of pain or my worries about the future. My successes feel all the
Congress and their staff. Before and during those meetings, we more bright for being able to share them with a community of
tried to keep a few affirmations in mind. First: we are stronger young people who know that sometimes even taking a walk
in numbers. Having my blood brothers and sisters beside me can be a struggle. Though our stories are not identical, being
made me more confident because I knew that I was not alone in part of a team of like-minded (and -bodied) individuals has
my experience. In addition, during these meetings, we speak not energized me, and I know that we have each other to lean on
only for ourselves, but amplify the voice of the entire bleeding as we continue to fight for a better life. n n
disorders community. By sharing my story, I bear witness for ev-

8 Dateline Federation | Spring 2018