Elena Hung wears a Little Lobbyists button, holding a microphone, and speaking at a podium that says “Care Can’t Wait.” Photo credit: Brooke Anderson @MovementPhotographer
On August 26, 2024, the Care Can’t Wait bus tour kicked off its first event in Chicago, Illinois. "Care on Tour" would wend its way through nine cities in seven states. It was part of an ongoing national campaign by the Care Coalition that highlights the importance of affordable, accessible care – including aging and disability care, child care, and paid leave – through powerful storytelling, community engagement, and policy advocacy.
On the Care Tour, we passed the mic and heard from local families who are struggling with reliable and affordable care for their loved ones.
We heard from family members forced to choose between caring for themselves or their parent, or their child: a choice no one should ever have to make.
We heard community leaders speak on paid family and medical leave.
And, close to my heart, we had disability representation throughout the Care Tour. In Michigan, we heard from Dessa Cosma, the Executive Director of Detroit Disability Power, and, in Georgia, from Dom Kelly, the co-founder and President of New Disabled South.
We also heard from elected officials from the U.S. House of Representatives, including care champions Debbie Dingell and Nikema Williams, who pledged to continue their support of robust care policies because they understand what is at stake.
As serious and heavy as this topic can be, there was also so much joy. That’s right: joy! The bus tour organizers made time and space for joy at each stop: we had marching bands, a popsicle truck, face painting, live music, a stilt walker, a disabled acrobat performer, and much more!
There to represent Little Lobbyists families, I was honored to bear witness to the personal care stories everyone shared at the mic and the intimate conversations that followed. As I spoke alongside caregivers, care workers, those receiving care, and elected officials, I couldn’t help but note the common thread that connected us all. My care story might not be the same as yours, and your care story might not be mine, but it is undeniable that we all have a care story. This tour felt like we were one community: we each had a care story that united us in deeply personal and urgent ways. Care wasn't something that happens to other people; we are all involved with care.
Group photo at Love Park in Philadelphia, PA: A couple dozen advocates pose by the LOVE sculpture (bright red “L” & “O” stacked above “V” and “E”) with the skyline of Philadelphia behind them. They wear colorful t-shirts and hold up signs, including “Care Can’t Wait” (yellow, white and purple lettering on a dark purple background). Photo credit: Brooke Anderson @MovementPhotographer
This is my care story:
My daughter Xiomara, the joy of my life, is the reason I was on the tour and why I co-founded Little Lobbyists. She turned ten this summer and just started the fourth grade. These were two milestones that were never, ever promised to a medically complex and disabled child like her.
Xiomara attends school with her nurse. She uses a tracheostomy to breathe and a feeding tube for all of her nutrition. She has a nurse by her side at all times to care for her medical needs and keep her safe. Without a private duty nurse, Xiomara would not be able to attend school and learn. Without a one-to-one nurse, kids like her would not be able to live at home with their families.
I think of all the disabled children who cannot attend school because they don’t have the care they need. I think of all the disabled children who cannot live at home, and the families that are torn apart because they don’t have the care they need.
I have often said: there is not a single thing I would change about my daughter, but there are a million things I would change about this world so that it would be worthy of her.
And the first thing I would change is to fully fund home and community-based services. Doing so means that disabled children and disabled adults can live in the community they choose, surrounded by their loved ones, and receive the care they need.
It wasn't that long ago that a child like mine would have been automatically institutionalized–kept away from her family and her community– just for being disabled. Some still are. Disabled people risk being institutionalized when they can’t get the care they need at home. That's not right.
Because there is nothing wrong with being disabled!
What is wrong? Disabled children not getting the care they need.
That is my care story, and the care story of countless Little Lobbyists families. Our stories need to be told and heard. We know what is at stake if our disabled children do not receive the care they need.
“Care on Tour” was a periodic reminder that while a few are trying to destroy what we hold sacred, there are many more of us trying to create a world of justice and equity and joy. We need to work hard, but we cannot deny ourselves joy in the process. If we do, we are missing the whole point. If we are fighting for our kids to survive, but not thrive, we are missing the whole point. We can do both! We can survive AND thrive! We can work hard AND play hard.
We will hold onto that joy while we all do everything possible to elect leaders who will champion care and fight for our disabled children to live at home, attend school, and be part of their communities.
Thank you to the Care Can’t Wait Coalition and to the partner organizations who supported this bus tour: Caring Across Generations, National Domestic Workers Alliance, MomsRising, Paid Leave for All, SEIU, and GoFundMe.
Special thank you to Ai-jen Poo and Nicole Jorwic for your leadership, partnership, and friendship.
#CareCantWait
Elena Hung is the Co-founder and Executive Director of Little Lobbyists. She lives in the Washington, DC area with her two human children and two feline children. Elena enjoys hiking in the mountains, wearing dresses with pockets, and eating potatoes.