Our Little Lobbyists families began their whirlwind day in the Capitol by attending a press conferences held by their hosts with other guests for the 2020 State of the Union Address.
Last week four of our Little Lobbyists families were honored to attend the State of the Union, representing all of our families of kids with complex medical needs and disabilities. We asked them to share their experience with us.
Rep. Wexton with Aire and Walewska in front of the Capitol.
Walewska Watkins and her son Little Lobbyists Aire were guests of Representative Jennifer Wexton (VA-10):
I’ll remember Rep. Wexton’s gentle voice as she took my son Aire by the hand into the Capitol, Rep. Dingell’s sincere pain at hearing terminal patient’s stories, Sen. Stabenow’s sweet joy when speaking about her granddaughter’s fight against congenital heart disease, and, of course, Aire’s little boy pride at standing up for health care (“Because it’s health care, not health careless.”) I’ll treasure the LatinX community’s delight at hearing my Congresswoman speak Spanish and my voice advocating for the protection of our children with preexisting medical conditions and disabilities.
Sitting with the main act beneath me, I couldn’t help but notice the state and territorial shields that decorate the ceiling of the House Chamber. As a Puerto Rican islander, I was delighted by the irony that our territorial shield stood high above him—a silent remainder of the thousands who unnecessarily fell ill, died, or were displaced after Hurricane María and who will forever hang over his head.
I have no doubt that the main act doesn’t believe his own words and believes they can distract or destroy us. He believes this, because he thinks the State of the Union is just a speech he gives. If he really wanted to defeat us, he should have cancelled the show so we couldn’t spend the day connecting with patients, families, and activists from around the nation. If he wanted to win, he shouldn’t have given us the chance to learn about each other’s initiatives, strategies, and success. The State of the Union is what it is, but the State of our activism is United.
Andrea her daughter Louisa and her husband Tom with Senator Stabenow.
Andrea Pietrowsky, mom of Little Lobbyists Louisa, was the guest of Senator Debbie Stabenow (MI):
Tuesday evening was certainly unforgettable. It was an honor to attend as a guest of Senator Stabenow, and represent not only my daughter’s personal health care story but stand for the rights of children with complex medical needs and disabilities everywhere.
As a guest I was obligated to follow the formalities of Congress, and the rules on the back of my ticket—which interestingly indicated to remain seated and not to applaud. My inner dialogue said, “Yes, I can do this”. Seated in the gallery between two friendly and conversational individuals, I quickly learned they too both had personal preexisting stories of their own.
I was eager to hear how President Trump would explain his commitment to protect Americans with pre-existing conditions when in fact everything he has done since taking office was aimed at decimating the Affordable Care Act and taking away those very protections. However, his words were hollow and contradictory. He specifically said, “A good life for American families also requires the most affordable, innovative, and high-quality health care system on Earth.” But where on Earth would we find this without legal protections from discriminatory health insurance practices?
He spoke of an executive order he signed that would call for medical transparency of costs, but that’s not even useful without coverage of all pre-existing conditions. How could one search for a “bargain” on something as costly as open heart surgery and inpatient recovery? Or the complex birth of a premature baby? Or go comparison shopping for unplanned emergencies?
The topic of prescription drug costs was no better, actually much worse. We all heard his disingenuous call to action, “Get a [bipartisan prescription drug pricing] bill on my desk, and I will sign it into law immediately.” But we know that Republican Senator McConnell has been sitting on H.R.3 - The Elijah E. Cummings Lower Drug Costs Now Act for several months.
Another disappointing moment was the abandonment of a commitment to maintaining and improving public education, which is essential for all children, including children with disabilities. Our president referred to public education twice by calling it “government education” purposely creating a negative connotation to sell it as some sort of form of socialism.
It was sinking feeling to step away from a once-in-a-lifetime opportunity questioning if a single truth was told among so many blatant lies.
Leslie with her son Jonathan and Senator Schumer
Leslie G. and Little Lobbyists Jonathan were the guests of Senate Minority Leader Chuck Schumer (NY)
“The day was an exciting whirlwind of activity! Members of Senator Schumer's staff really went out of their way to accommodate us and ensure we had a special day. Everyone was gracious, incredibly helpful and attentive. It felt surreal to be in Senator Schumer’s office, he even personally wrote a note to excuse Jonathan from school for the day! It was an exciting experience we will remember for a long time! Jonathan was so keyed up, even though he was tired, it took him until almost midnight to get to sleep.” Comments taken from dictation.
Elena and Xiomara with Speaker Pelosi
Elena Hung and Little Lobbyists Xiomara were the guests of Speaker Nancy Pelosi:
It started with me picking up Xiomara from school and taking the train down to DC as we always do. We have done this trip so often and yet, no matter how many times we walk out of Union Station, the moment I see the Capitol for the first time still takes my breath away. Every single time. It might be my immigrant roots or my stubborn optimism, but the sight of the dome will always be a special treat for me.
I appreciated the opportunity to attend the State of the Union, to be in that room and experience history taking place. But I heard the same lies you heard, and I saw the same Republican members you saw chant "four more years!" without any regard for how their policies are harming and killing our loved ones.
It was disgusting. I sat through all of that, arms folded across my chest, shaking my head. I may or may not have forcefully called out "that's not true!" several times. I did not stand for the president as he entered and left the chamber. I did not clap as he boasted about his cruelty. Instead, I said a quick prayer for all those who have been terrorized because of him.
But this shameful spectacle does not define my evening.
Immediately before the SOTU, Speaker Pelosi hosted a dinner reception for House Democratic members and their guests. I ran into so many members and so many staffers I have worked with. Many of them have watched Xiomara grow up over the years. Xiomara recognized them too.
Throughout the reception, I also got to meet other invited guests. A majority of them were health care advocates doing amazing work. Being in a space like this filled with some of the most powerful and generous people in the country can be incredibly intimidating and stressful, but instead, it felt like a reunion with chosen family who really, really love my kid.
I had shared Xiomara's accessibility needs ahead of time, and we had a team that was assigned to us to ensure our comfort. I felt so supported in every way knowing Xiomara was being included with so much thoughtful planning. And that was really special.
As I headed back home that night, I was left with this: in these dark times, there are still lots and lots of good people doing good work. There are lots of people who care a lot, and they are not giving up. Neither should we.
Elena and Xiomara on the Speaker’s balcony in front of a spectacular view of Washington D.C. at night.