What I Learned by Advocating with Little Lobbyists (by Anne Louis)
Adonise, an elementary-school-aged Black boy, poses with his arms out wide on the rooftop plaza of the MLK, Jr. Library in Washington, DC. He’s wearing a teal-blue Little Lobbyists t-shirt and khaki pants. The DC city skyline is behind him.
My son Adonise is a second-generation Haitian-American who has a teacher and a technology professional for parents. Adonise is curious, rambunctious, funny, and intelligent. He’s a budding drummer, and he loves the playground and to wave the Haitian flag every morning. We call him Donnie, but I call him Don. He was born prematurely and came home just 4 days shy of his first birthday, after 361 days in two different Neonatal Intensive Care Units (NICU) in two different states. Donnie’s disabilities include autism and cerebral palsy. He also has a tracheostomy to help him breathe.
Our family of four journeyed to Washington, DC, to learn how we can better support my son's needs, and we could never have imagined how our cup would fill with so much love, support, and knowledge. Imagine venturing to DC to learn, and then just be baptized by the support and awareness of so many amazing people. I wanted to dive into understanding how I can educate those in my community about Home and Community-Based Services (HCBS), Medicaid services that help children and adults live in their communities, where they belong. My goal was to bring what I learned back to Harlem.
As representatives of Little Lobbyists, we attended the White House Disability Pride Month Convening and, the next day, the Care Can’t Wait Coalition’s Community Integration Summit. Throughout our lives, we have encountered many transformative experiences. However, this moment stands as the most significant intersection for me. For the first time, I felt a huge sense of belonging. My identity includes various elements: a mother, a multilingual Black woman from Harlem, NYC, a parent to extraordinary children, and the wife of a supportive Black man. Adonise, too, felt free, felt the love, felt seen. He was ecstatic visiting the sights in DC, meeting other disabled children and having fun, and just playing and being a kid.
Wearing his eyeglasses and Little Lobbyists t-shirt, Adonis poses on a city street with the U.S. Capitol building the distance. He has both arms raised above his head and flexed in an expression of exuberant power.
When Adonise received an invitation to the White House, I was apprehensive about my lack of knowledge in navigating this unfamiliar space. But at the event, when Anna Perng, Senior Advisor at the White House’s Office of Public Engagement, stepped up to the microphone and said: "In this room, we welcome all differences, and we will not silence anyone," her words struck a chord with me, and as the speakers shared their personal experiences, I was moved. Their desire to thrive in this world, despite the challenges they faced, bubbled up emotions within me.
The event celebrated the achievements of the disability community and highlighted the importance of continuing the fight for disability rights, led by those with lived experience. My heart swelled when disability rights lawyer and activist Haben Girma concluded the session by discussing Helen Keller's published works. Keller’s and Anne Sullivan’s stories were a constant source of inspiration during our hospital stay, especially Sullivan teaching Helen to build on her abilities. While my son's will to survive was a driving force for us, we didn't just want him to survive, we wanted him to thrive, regardless of the limitations imposed by the perspectives of his medical team.
Unfortunately, ableism can feel as if it is in the very fabric of the Neonatal Intensive Care Unit (NICU) and PICU in the U.S., woven into every knot of these institutions. Ableism influences how specialists approach acute events and discuss quality of life. Imagine the positive impact if disability advocates worked alongside, or provided training to these professionals, transforming the narrative around what life with complex medical needs can look like.
Adonise sits, smiling broadly, in a meeting room chair in front of a large banner that reads “Disability Integration Makes Our Lives and Communities Whole.” At the top of the banner is the Care Coalition logo, a corona around the words “Care Can’t Wait.” To the right of Adonise is an electronic sign displaying the topic of the next panel and the speakers on it.
At the Community Integration Summit, we listened to many panels filled with adults with disabilities, which meant recognizing that advocating for people with disabilities starts with teaching our children self-advocacy from the start of their journey. I was eager to have a more extensive conversation on all these issues I had recognized for years.
I had an opportunity to ask a question of the panelists, and decided to express my concerns about the need for training NICU, PICU and ICU physicians on the positives of living with complex medical needs and disabilities. As I was asking my question, it dawned on me, “Oh God, I am in a room where everyone understands.” I was overwhelmed with emotion because for years we have been yelling into this void and I had had enough. There are not enough people with disabilities that work within the ICU space, and I want there to be more.
It was also amazing to see my husband speak up for the fact that there were not many dads, especially dads of color, in the disability advocacy space. He hears so many maternal perspectives on caregiving, but has rarely been able to see fathers like him that are in the thick of it.
Overall, our time in DC spoke to much of the work and education we have to continue to do as a family. We are strong and come from a long history of revolutionaries. May we always tap into that and teach Donnie how he will do the same so he can create the blueprint for the next generation of kids like him.
Anne Louis is Adonise and Adriande’s mom. Anne is a family advocate representing Harlem, NYC. She is a digital technology professional who currently works for Charter Communications. Anne speaks several languages, but aspires to become more fluent in disability policy. She is passionate about her Haitian heritage, and is eager to be a bridge between complicated policy paperwork and the quality care everyone deserves regardless of their education or ability to speak English.