Claire in a Chair: 8

We are kids — we can’t vote. We don’t get to decide who will be our city’s mayor or our nation’s president. So because we are denied the right to place a checkmark next to our our candidate, we are told to get loud, stand up and to make our presence known in other ways.

So what do you do if you can’t stand up? As cheesy as it sounds, I’ve chosen to make my voice louder.

Advocacy is a crucial part of any group, and for those with disabilities, advocacy alone has made numerous important strides.

My experience with advocacy has been within the hospital. I have worked with and served on various boards whose sole purpose is patient advocacy. When the patient is a child or young adult, advocacy becomes crucial. It is their body, their life, yet others are making decisions for them. There comes a time when the true patient needs to assert him or herself, for me this was around twelve. However, even at the prime age, patient advocacy is hard to achieve because doctors and hospitals are scary and parents are domineering. Teenagers like myself who serve on the Teen Advisory Board at Children’s Mercy work to make complicated medical things more understandable for children. We try to make the scary experience a little more enjoyable through events and activities like an inpatient scavenger hunt.

The Teen Advisory Board is given numerous clinics’ paperwork or brochures to look over, edit and make more accessible for children and young adults. We serve as the voice for the kids in the hospital when we ask the head hospital chef for more milkshake choices. And we strive to be the faces patients think of when they imagine “sick kids.” We’re just like them, but with strong voices and a dominant presence in our own health decisions.

Similarly, I am heading to San Diego this week to represent KIDS or Kids and Families Impacting Disease Through Science at the Pediatric Academic Societies meeting. There we will speak with doctors and researchers from various institutions across the nation on why and how children should be included in trials.

My involvement with the hospital has allowed me to have a voice while simultaneously giving a voice to others. I love patient advocacy, but I hope to soon grow outside of the hospital, into the community and the real world. And I hope to do so through political, rather than patient, advocacy.