**New to our story? Catch up here!
What is an advocate? A person who tirelessly fights against adversity? Someone who yells and screams and kicks and, through sheer will, never backs down? Maybe.
But I believe a true advocate is someone who is not afraid to tell their story. Even the hidden parts that social media often doesn’t see. The details that you leave out of the conversation with your co-workers. The last whispers of reality before you drift off to sleep.
I didn’t sign up for this role. When the nurse at the hospital told me that my first-born had “some soft signs of Down syndrome,” I didn’t rejoice and think of all the people I would get to meet because of Lila. I hunkered down in my little new reality and slowly changed my thinking from “Why us?” to “Why not us?” And when I came out the other side, I was ready to take on the world. The r-word sayers, the school segregators, the starers. Literally EVERYONE who was not on-board with the building the best world for Lila. And then I quickly found out how exhausting it is to fight that battle yourself. In person, in your mind, on social media.
So I came to this conclusion: you fight when you have to, you calm yourself down when you can, and you ALWAYS, ALWAYS tell your story to everyone that will listen.
And you know who listened yesterday? A freaking Congressional sub-committee. For two years, the Global Down Syndrome Foundation has been working to get Congress members to listen to the challenges and shortfalls of the lack of medical research for conditions that affect the roughly 300,000 people living with Down syndrome. A number that doctors say is growing as the birth rate in America increases. And two weeks ago, they got the word that it was on! So the scramble began to find mothers and fathers and brothers and sisters to show up in D.C on a few days notice and represent the families across the US living with a family member with DS. We would meet with our Congressman or woman before the hearing and tell our personal stories. Show pictures of our amazing kids. Talk about how much they are accomplishing, and how more research would only increase those celebrations and opportunities, and their quality of life.
We met with the Global Down Syndrome Foundation crew at the Capitol Club to debrief on the importance of the hearing. Families from 11 different states made the trip to D.C.
Michelle Whitten is the co-founder and president of Global and does amazing work from Colorado for all of our families. Her daughter Sophia has DS and her family mobilized after her birth, bringing together some of the leading experts in the field and supporting medical research that has sadly been forgotten over the past few decades.
After meeting the other families, we headed to the Rayburn Building to meet with our local Congressmen. I was so lucky to have my good friend Kathryn Lewis with me. She’s the former president of the Chattanooga Down Syndrome Society and the mother of Sarah Jane, one of Lila’s good buddies.
We met our Tennessee Congressman Chuck Fleischmann from District 3. We told him about Lila and Sarah Jane and all of the amazing things they are doing. And our fears for their futures because of the lack of research through the National Institute of Health for conditions that they may face as they age, specifically Alzheimer’s.
Fleischmann is on the Health and Human Services Appropriations subcommittee. On October 25, this group heard testimony from 2 panels. Rep. Pete Sessions (TX), Rep. Cheri Bustos (IL), and Rep. Cathy McMorris-Rodgers (WA) all have extensive knowledge about Down syndrome. Representatives Sessions and McMorris-Rodgers have children with DS and have been tireless advocates for awareness and other issues relating to this population. Rep. Bustos is the co-chair of the Congressional Task Force on Down Syndrome. In the hearing, she said, “while National Institute of Health funding has seen tremendous growth over the last 20 years, the funding for Down Syndrome research has remained relatively flat… With a stronger commitment from Congress to support Down Syndrome Research throughout the National Institute of Health, we could be even closer to solving the great health problems of our time.”
On the next panel, Michelle Whitten and some of the leading doctors in the study of Down syndrome. Dr. William Mobley who is the Executive Director for Research and Treatment at the University of California-San Diego and Dr. Joaquin Espinosa. He is the Executive Director of the Linda Crnic Institute for Down Syndrome. The work they are doing is amazing and could mean so much to not just people with Down syndrome, but the general population. Dr. Espinosa says 1 in 4 people in the world will die from some form of cancer. That’s not true for people with Down syndrome. It is virtually impossible for them to get tumorous cancers. So there is something on that 21st chromosome that affects the growth of those specific diseases. If doctors can figure out the genetic key to unlock that code, can you imagine what that mean for everyone? The opposite is true for Alzheimer’s. Almost all individuals with DS will show some signs of dementia by the time they are in their 40’s. Dr. Espinosa believes this could have something to do with an overactive immune system but they can’t tell for sure until they research this further. That’s what this day is all about.
And then came Frank.
Frank Stephens is a self-advocate. This is how he described that to the members of Congress. “Just so there is no confusion let say that I am not a research scientist. However, no one knows more about life with Down syndrome than I do.” Frank sometimes spoke with a slight stutter. Some of his words were a little difficult to understand. But they heard his point loud and clear. Frank delivered what four different Congressmen and women described as the most moving testimony they have EVER heard in a committee hearing room. Frank told them, “Whatever you learn today, please remember this: I am a man with Down syndrome and MY LIFE IS WORTH LIVING!”
Listen to his amazing opening statement below:
And then a few things happened. People cried. Everyone clapped. And minds changed. I can guarantee you some of the people in that room, no matter where they sat, did not expect that from Frank. But Frank brought that room to their feet and everyone that heard him, whether there in D.C. or later online, would never be the same.
I know I certainly won’t You see, even if you live everyday with this kind of amazing…
there are still scary moments. What will their future be like? What happens after I am gone? Will the world be kind? How many of these unknowns can I control and how much is out of my hands. But then I heard Frank. And I am reminded of the possibilities I preach to everyone else about. The limitless future, the hard work I know we can conquer, the other people that are working hard toward the same goal.
And then I hope. Hope that the people sitting across the committee room from me that day, felt the same thing. That they will take on this fight with us. That they will not forget the hundreds of thousands of people living with DS and the people who love them after the applause is over.
That is where you come in. You don’t have to be in Washington D.C. to advocate. You don’t have to tell your story to a Congressman. You can tell your neighbor, your Facebook friends, your mailman. You show the world that people with Down syndrome are living extraordinary lives that matter. That are just as valuable as those fighting diseases like MS and cancer. That research is important. Not just for them, but for all of us.
They called my Lila and the people whose karyotypes look just like hers a medical gift that day, for all the mysteries their genetic structure might help to unlock.
I think they are wrong. I think they are a gift to the entire world.
***Want to share your story? Learn how here in the advocacy section of the Global Down Syndrome Foundation website.