From the very beginning, when a small group of families of children with complex medical needs and disabilities made a stir by visiting Senate offices in 2017 to protect the Affordable Care Act, Little Lobbyists understood the importance of representation. We knew legislators needed to see our kids with complex medical needs and disabilities – with their caregivers, medical and mobility supports, loved by their families, living in the community – to understand that our kids needed their legislators to protect their access to health care and inclusion, the same things every child needs.

Halloween trick-or-treating in cute costumes while visiting Congressional offices was an opportunity for our kids to have fun (while advocating). Like magic, doors we’d been knocking on for months finally opened and, for a moment, some of the barriers seemed to disappear. 

But some doors never opened. From 2017-2020, the ableist barriers were clear even before we knew what the former president actually said about his disregard for our children’s lives. We never thought we would see our families visit the White House.

Fortunately, Americans chose new leaders for the White House in 2020, including Vice President Kamala Harris, who met our children as a Senator and worked to help us protect them. Despite this connection, we could hardly believe it when our families were invited to visit the White House for the first time. A few years and many visits later, we’re still awe struck by the White House’s beauty and history, but we also know that our families are truly welcome. The Biden-Harris White House has worked to go beyond inclusion, asking for our feedback and continuously improving accessibility to ensure families of kids with complex medical needs and disabilities understand that the White House is our house, too.

We shared our dream for as many kids with disabilities as possible to visit with White House staff, and in 2023 the White House hosted the very first disability friendly Easter Egg Roll in history, followed by the first disability friendly Halloween celebration. This year, events were expanded to include more kids with disabilities, and the White House unveiled a re-imagined tour that prioritizes accessibility.  

For our kids with disabilities and complex medical needs – with their caregivers, medical and mobility supports, loved by their families, living in the community – to be integrated as a welcome part of White House traditions is a truly joyful thing. It’s also powerful representation. When our families share space with those who make decisions that impact our lives our needs and opinions are also present. More importantly, when our families and kids with disabilities see themselves within the halls of power, they know that they belong.

The fact that people with disabilities and complex medical needs belong everywhere they want to be and can live great lives with support – like everyone else – has been obscured throughout history by pervasive, systemic ableism. Though we still have far to go, significant progress has been made in recent decades, and disability rights in the U.S. have had bipartisan support: in 1982 President Reagan created the first Medicaid waiver; in 1990 President Bush Sr. signed the Americans with Disabilities Act; in 2010 the Patient Protection and Affordable Care Act was made law by President Obama. 

But from 2017-2020 President Trump worked to undo much of that progress, abruptly ending the era of bipartisan support for disabled Americans. Since then, the former president has shown contempt for the lives of our children, using disability as an insult and slur in recent days.

In 2020, voters rejected this abelism, and for the past four years our families have been safer: access to health care has expanded, disability civil rights have been improved, and our children have seen themselves respected and valued by our nation’s leaders. 

Today, the choice to reject ableism is once again before us. Our families know that disability is part of life, we will all need to give or get care, and living self-directed lives in our own homes and communities is a universal civil right. 

Before you cast your vote in this election - we ask you to see the lives you impact with your decision. The care you save could be your own. 

First Dr. Lady Jill Biden meets Little Lobbyists (and Astronaut) Adonise with his sister, mom Anne, and Aunt, after reading a story for the children during the White House 2024 Hallo-read celebration.

Little Lobbyists Destiny (an Egyptian princess) and Simon (Santa) hold hands and pose with their families during the White House Hallo-read celebration!

Little Lobbyists Cole and his mom Victoria hang out with loveable alien Stitch on the White House Lawn

Egyptian princess Destiny rides in style as her brother the Pharaoh pushes her “chariot” to collect treats

Two cute astronauts (Little Lobbyists Adonise and his sister Adriande ) take a break from NASA to sit on the White House lawn and check out the treats they collected

Little Lobbyists Santa (Simon) with Jack and Sally from the Nightmare before Christmas (aka Laura and Brian, his mom and dad) strike a pose in front of the White House Hallo-read decorations

A teenage girl sits in her adapted stroller. She is in an airport, the windows behind her showing blue sky and a boarding chute. A sign in front of her gives instructions for carry-on luggage.

The U.S. Department of Transportation has proposed new regulations that, if adopted, will grant a number of new rights for to disabled passengers on airlines, particularly those who use wheelchairs. These changes are long overdue. Your voice is important! The public comment period ends on April 27.

Our disabled loved ones deserve to fly with dignity and safety. Too often, wheelchairs are damaged or even lost by airlines. Too often, airlines do not give disabled passengers enough information on wheelchair accommodations on planes and assistance with boarding.

U.S. Transportation Secretary Pete Buttigieg wants to change that. If adopted, these new regulations would give disabled passengers the following rights to:

• Choose their own provider to repair or replace wheelchairs that have been mishandled by the airport or airline; 

• Ensure the prompt return of delayed wheelchairs; 

• Receive prompt assistance when disembarking; 

• Have their wheelchair waiting near the airplane’s exit door; 

• Be notified immediately if their wheelchair does not fit on an aircraft;

• Require annual training for airline employees and contractors who physically assist passengers with mobility disabilities and those who handle passengers’ wheelchairs; and 

• Make it easier for the Department of Transportation to fine airlines that violate the rights of disabled passengers.

Make your voice heard! Submitting comments only takes a couple of minutes. Click here to voice your support for these regulations. If you or a loved one has experienced difficulty flying, share your story about what would make flying a safer and more dignified experience for you.

If you think the regulations should go further, such as by requiring accessible bathrooms on planes or adult changing tables in airport bathrooms, share that as well.

Learn more about the proposed regulations in this story I wrote for AFAR magazine. Submit your comments no later than April 27th!

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Jamie Davis Smith is a mother of four who lives in Washington, DC. She is an attorney, writer and disability rights advocate.

Little Lobbyist Simon Hatcher poses with Ady Barkan in a Capitol Hill meeting room. Simon and Ady are seated in different types of wheelchairs. Ady raises his arm to give Simon a fist bump. Simon’s large, shaggy service dog pokes his nose between the two.

Ady Barkan, health care activist and co-founder of Be A Hero, passed away from complications of ALS on 11/1/23. This tribute is adapted from remarks delivered at CareFest in Los Angeles on 11/2/23. 

Like so many who loved him, when I think of Ady, I think of courage.  

In my experience, there are two types of courage.

There is the type of courage where we put on our armor and charge into the battlefield, and there is the type of courage where we strip down and bare our vulnerabilities for all to see. I find most people are one or the other. Very few are both.  

Ady was both. He was definitely both. 

I first met Ady Barkan in the summer of 2017 during the health care repeal fight in Washington, DC. This was shortly after he confronted Senator Flake on an airplane and the video of that conversation went viral.  

This was also when my first-ever visit to Capitol Hill with my daughter and friends accidentally resulted in me starting a national non-profit organization advocating for children with complex medical needs and disabilities: Little Lobbyists.

I can’t remember now if Ady reached out to me or if I reached out to Ady first, but we were united in our purpose from the very start. It was the beginning of many conversations, text messages, collaboration, and schemes to ensure health care for all. 

We attended countless rallies and press conferences together, sharing our personal stories for why health care is a human right and not a privilege. I often stood next to him at these events, with my amazing daughter at my side.  

My daughter, Xiomara, the joy of life, was born with a number of serious medical conditions that affect her airway, lungs, heart, and kidneys. She uses a tracheostomy to breathe, a ventilator for additional respiratory support, a feeding tube for all of her nutrition, and a wheelchair to get around and explore the world around her.  

A few years after his diagnosis, Ady would also come to rely on a trach, ventilator, feeding tube, and wheelchair just like Xiomara – all wonderful life-saving supports that allowed them to be able to have meaningful and joyful experiences. 

Ady challenged me, and he let me challenge him: on the power of how we use personal storytelling in the name of advocacy. On how we talk about disability in a way that focuses on access and self-determination. On how politics and policy is part of it all.

Elena Hung is at a podium to the right of a large stage, giving her remarks at CareFest. To the left is Jumbotron with a photo of Ady between two other activists at a rally.

Ady and I were both co-chairs of Health Care Voter, a national campaign to hold elected officials accountable for their votes on health care issues. We traveled across the country – physically and virtually – and reminded voters that we have incredible power with our votes in November. In Washington, DC, we also reminded members of Congress that they work for us, that we elect them to represent us, and if they fail to represent us, then we will vote them out of office.  

I am and will always be incredibly proud of the work that Ady and I, and both of our organizations, have done together. The work that I treasure the most is what we did to put a face on the importance of home and community-based services.  

It was not that long ago that disabled people with complex medical needs – like Ady and Xiomara – were automatically institutionalized.  

That was unacceptable to us. 

We built on the work of the disability activists who came before us, and we were relentless in the pursuit of the goal that disabled people live at home with loved ones instead of in an institution far, far away.

Ady bravely shared – over and over – how essential his caregivers were to ensure the quality of life he had, and to his ability to live at home with his wife and life partner Rachael and their two beautiful children, Carl and Willow. 

Through his storytelling and advocacy, Ady shared the humanity behind his diagnosis, and what is possible when we organize together.

Ady taught us that we can all BE A HERO in the story of how we care for one another. 

It is up to us now.

[If you’d like to share a story about how Ady inspired you, visit Be a Hero’s website. You can also donate to GoFundMe to support Ady’s family.]

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Elena Hung is the co-founder and executive director of Little Lobbyists.

Rob Stone of Little Lobbyists (r) poses with Judy Heumann (l) at her book signing in March 2020. [image description: Judy wears a colorful print shirt and smiles, seeming to share a secret with Rob, who also smiles. Huge bookshelves are behind them.]

This week, the disability community lost a great light. Judy Heumann has been called the mother of the disability rights movement, and her life reflected that. She was kind, warm, encouraging to Little Lobbyists families, and, especially to our children. 

Her own family, as described in her memoir, Being Heumann: An Unrepentant Memoir of a Disability Rights Activist, encouraged her to understand that she had the same rights as anyone else–just as we at Little Lobbyists now tell our own children. Disabled people have a right to an education, a job, a home, and the supports to live independently. We have the right to be included. 

Judy did all of this with both righteous anger and joy. Jim LeBrecht’s film Crip Camp: A Disability Revolution shows a young Judy at camp in the Catskills, igniting a fervor for independence and inclusion among her fellow campers who would go on to be leaders of the disability rights movement. We want our children to be like that–always demanding more. We want our children to be inspired by her book for young people, Rolling Warrior: The Incredible, Sometimes Awkward, True Story of a Rebel Girl on Wheels Who Helped Spark a Revolution. 

Judy said to reporter Joe Shapiro, "Disability only becomes a tragedy when society fails to provide the things we need to lead our lives — job opportunities or barrier-free buildings, for example. It is not a tragedy to me that I'm living in a wheelchair." That changed how Shapiro saw disability. We couldn’t agree more. 

Elena Hung (r), co-founder and executive director of Little Lobbyists, poses with her daughter Xiomara (c) and Judy Heumann (l) at Center for American Progress event, pre-pandemic. {image description: Judy is seated in her wheelchair, and Elena sits on the floor holding Xiomara. In the background are a set of empty chairs on a dais, as if an event has just taken place.]

Growing up in the 1950s and ‘60s, Judy faced a world far different than the world our children live in today. It is because of Judy and other disability advocates that our children are included in their communities now. She fought to go to school, fought to become a teacher, fought to live independently. She and her friends fought to implement Section 504, which “forbids organizations and employers from excluding or denying individuals with disabilities an equal opportunity to receive program benefits and services.” It was the first piece of civil rights legislation for people with disabilities, and led directly to the passage of the Americans with Disabilities Act (ADA). 

Our disabled and medically complex children can live in their communities, where they belong, survive and thrive, because of Judy Heumann. We will not forget. We will continue the work. We’ll tell our children about Judy, so they can tell their children. 

Thank you, Judy. We love you.