Adonise as an infant in the NICU, held upright by his parents, who have expressions of pure love and joy on their faces. Adonise wears a bright green and yellow outfit, accentuated with red trim. He is connected to the usual NICU supports, such as a pulse/ox and a breathing tube.

There was a time while I was caring for Adonise as an infant in the NICU when people tried to apologize for things they did not understand about my son. The unknown and the undescribed. He spent 361 days in the neonatal intensive care unit (NICU), where he received a tracheostomy to help him breathe, and was diagnosed with cerebral palsy.  

Adonise is now 5 years old, and he loves flying, attending school, and spending time with his family, especially our large family gatherings. Adonise dances and lives in joy. Since the NICU, in addition to his tracheostomy and cerebral palsy diagnosis, he has also been identified as Autistic. He lives a blessed life, with many adventures and full of love, but the nights from the NICU still stay with me. 

Many days I listened to medical professionals attempt to describe the life my son would lead with all his “challenges,” as they called them. I once asked an ICU attending physician, “Who gets to define what a ‘challenge’ is?” These complex medical elements may be part of Adonise’s life, but we shouldn’t describe them as “difficulties” or “challenges.” 

That first year, Adonise spent time in two NICUs: one in New York City, and one in Columbus, Ohio. In Ohio, the staff did a better job aligning parents with parent advocates who could speak to the very specific lived experiences our family was facing. Although this helped us, I often think how much more powerful it could have been if we had built more relationships with adults with disabilities in the NICU. Neurodivergent adults provide a different perspective on what life can be for our children. We can learn from hospital staff about tracheostomy life or G-tube care, but my adult friends who have trachs constantly provided perspectives that helped me navigate my son's disability as a partnership.

These partnerships are important to our children’s futures. Medically complex children are socialized as if they will have less fulfilling lives, and this socialization often starts in a medical setting. Most of the time we can assume that medical professionals are not living with medically complex needs, they are ‘clocking in’ to them. They evaluate scans, they assess your child, they bring you into a room, and they ‘med-splain’ a diagnosis or condition that will become part of your child’s life. There is so much gloom and doom instead of focusing on the rich opportunities associated with a new diagnosis. Is it fair to provide “information” on a diagnosis as if it is a disease? Is that the way we need to frame life changes? 

Ableism has always taken a front-row seat on these journeys. Medical professionals assume they can explain what life will be like with a diagnosis or medical intervention. Why do doctors and nurses feel they have the right to illustrate a life they only understand through the lens of a professional, not a personal context? 

Adonise lies in a hospital bassinet while his dad stands over him, holding a Dr. Seuss book so Adonise can see the pictures and reading aloud. Both look content.

Adonise was constantly confronted with ableism I wasn't then prepared to advocate against. Since he couldn’t speak up for himself as an infant, we as his parents had to deal with medical professionals and their fear-based advice masked as expertise. Every time we were given any instruction, the tone was always pity, and it frustrated me. It was truly all gloom and doom to them. 

Then one day I met a neurologist who taught me a lesson I will never forget. Part of advocacy is coming to terms with who you were before you had the right education. After all these doctors gave us their opinions on Adonise, I asked to speak to a neurologist because, in my limited view of children's development, I assumed a neurologist would have the answers. 

I would encounter this doctor twice. The first time would be at Adonise’s bedside where she said, "I do not have a crystal ball, Anne. I cannot and will not tell you what your child’s future will be." I remember being so upset with her.  I remember thinking to myself, you left your office to come and tell me nothing and still bill hours? 

A year later, we had our scheduled neurology follow-up by phone, one-year post-hospital. We had adjusted well to our new lives. We got on that call, and I immediately recognized the neurologist from Adonise’s bedside, and I burst into tears. I now understood why she refused to tell me about my child's future: nobody can tell you what your child's life will be like. No one should have that authority.

Life is truly what you make it. Adonise would not be defined by anyone, and he has grown into a remarkable boy. His life is a testament to the fact that we all have the power to shape our own destinies. Words cannot express how thankful we were to everyone who worked around the clock to save his life. However, if more staff and physicians were exposed to more medical complex journeys from various disabled adult perspectives, maybe they could help inspire children and families to think beyond their diagnosis. How can we get such policies in place to empower our families?  

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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. 

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.

Grace at Nauset Light Beach in July 2014, wearing a black and purple swimsuit.

This time of year brings back lots of memories of family vacations. Cerebral palsy means that accessibility is a priority on vacation. Our family enjoyed trips to Cape Cod, Maine, and New Jersey when I was growing up. Planning an accessible vacation can be challenging, but it is possible.

Finding an accessible place to stay is often difficult. Growing up, we often stayed with family members when we went away. Many of my relatives have houses that are older, and not built with accessibility in mind. It was easier to navigate inaccessibility when I was younger.  However, it has become more challenging to stay overnight with my relatives as I have become an adult. 

For example, as a child it was easy for someone to carry me upstairs where the bedrooms were. As I grew up, this became uncomfortable and dangerous. I became self-conscious about being carried in front of everyone else as well.

Staying in hotels can be challenging for some people. Many hotels have a certain number of accessible rooms available for guests, so be sure to check in advance. However, meeting accessibility standards and being accessible are often two different things. In my experience, finding a hotel room with a roll-in shower is particularly challenging. Always ask about these issues and others when you book an “accessible” hotel room. 

Accessible tourist attractions are sometimes hard to find. I no longer enjoy going to the beach, despite enjoying it when I was younger. As I have grown, it is much more difficult for me to be carried on the beach. Mobility devices are typically not designed for use in the sand or other rough terrain. 

Grace petting a dolphin at Miami Seaquarium in August 2016

Nowadays, I enjoy indoor attractions such as museums. One of my favorite museums is The National Baseball Hall of Fame and Museum located in Cooperstown NY. The exhibits are accessible, and the museum itself has plenty of room to navigate. Unfortunately, the town of Cooperstown doesn’t have many accessible restaurants or shops–so be sure to do some research in advance about the towns you may visit. Simply googling “accessible travel” plus your destination may yield helpful results.

I also enjoyed the Whydah Pirate Museum located in West Yarmouth MA, which is accessible. It was more interesting than I thought it would be. I enjoyed seeing old artifacts that were only discovered in the 1980s, after the ship’s remains were found.

I also prefer to go on vacations when the destination is easy to get to by car. Several years ago, I went to Florida with my mom and younger sister. We had a wonderful time, but the plane ride was hard for me. During the flight, the differences in altitude caused my spasticity to increase. 

In addition, traveling on a plane is often challenging for disabled people who require mobility devices. Airlines frequently damage wheelchairs when storing them on the plane. I have never taken my wheelchair on a plane, because I don’t want to risk it getting damaged or lost. The U.S. Department of Transportation has a list here of the rights of disabled travelers using airlines, as well as additional travel resources. In addition, Amtrak has significant resources for disabled travelers. 

Vacations are a wonderful way to enjoy the warm weather. Planning an accessible vacation requires creativity and research. You can find groups on Facebook to help you plan and give you ideas for fun vacations! An accessible vacation can leave you with memories that last a lifetime. 

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Grace Dow is a writer from Massachusetts who focuses on disability rights issues. In her free time, Grace enjoys seeing her friends and family. She also enjoys reading, and following her favorite sports teams.

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.

Rob Stone getting on the school bus in the early 2000s [image description: a very young boy is seated in his wheelchair being lifted into the back of his school bus on a mechanical lift. He wears a hooded jacket and is smiling.]

I can still remember our family’s first encounter with disaster preparedness–or lack thereof–it was the day of 9/11, 2001, and my son Rob was four years old. My husband and I had waved him off to preschool on that beautiful, bright blue morning at our home in the Washington, DC suburbs. An hour later, disaster struck. My medically complex and disabled child was miles away and I didn’t know what to do.

Phone lines were jammed; all the main routes in the DC area were clogged with traffic. I was frantic–unable to figure out whether Rob was safe, or when he might come home, or how I could even get to him. I was also waiting on a plane that would deliver a medication solvent Rob needed–I didn’t know if it had been diverted. Without that solvent, his acid reflux would spiral out of control. While the 9/11 attacks, in the end, were limited to some very specific targets, at the time, no one in the DC metro area knew whether this would be a continuous and sustained assault–communications, the power grid, access to pharmacies and hospitals were all a big question mark.

Two decades later, we’re all inhabiting a world that’s vulnerable to the effects of climate change, and our power grids are increasingly subject to failure. In recent years, social and political tensions in the U.S. have led to violence and unrest in our communities, including attacks on the power grid, and attacks–real or threatened–on state houses and the U.S. Capitol. 

While our families are accustomed to contingency planning on an everyday basis, who will look out for us when something major strikes? The scary truth is, no one looks out for disabled people when disasters like 9/11, natural or man-made, strike. 

In recent months, California, New York, and North Carolina have all been affected by storms and prolonged power outages. As Alice Wong says:

“Whether they are caused by wildfires, earthquakes, hurricanes, flooding or storms, power outages are a life-and-death issue for many of us. Time and time again, disabled and older people are left behind or not prioritized in emergency planning.”

The Partnership for Inclusive Disaster Strategies is trying to ensure that governments have disaster planning in place for people with disabilities: “[We are] the only U.S. disability-led organization with a focused mission of equity for people with disabilities and people with access and functional needs throughout all planning, programs, services and procedures before, during and after disasters and emergencies.” Tip: Bookmark their website on your phone–there are great resources.

Currently, Medicaid rules in most states cut us off from two of the lifelines we need to survive under emergency circumstances: Access to home generators and backup supplies of medication. 

In 2001, it was easier to “get ahead” on medications, and I was able to squirrel away at least a week’s worth to put in Rob’s go bag. However, insurers have been tightening up on prescriptions, and now we can only stay a few days ahead. A California family experienced this horrible situation during recent flooding. Federal and state Medicaid rules need to be changed to provide a modicum of support for disabled persons during these increasingly common disasters.

I’ve learned to be as prepared as I can, although I worry it isn’t enough. In addition to go-bags, while planning for a summer vacation, I found that I could buy back-of-seat storage units for our van, which can hold essential supplies at the ready on a regular basis. I also keep the car chargers for Rob’s equipment in the glove compartment at all times. We have day and night medication and treatment schedules on paper and on our phones. 

You all know the drill. So let’s talk tips and tricks: How do you stay prepared? What’s your advice?

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Jeneva Stone is the Little Lobbyists blog manager.

Photo Credit: Official White House photo by Pete Souza. [image description: Lois Curtis (center) presents President Barak Obama (r) with one of her paintings. To the left of Lois is her direct support professional. They are in the Oval Office.]

On June 22, 1999, when the U.S. Supreme Court issued its landmark disability rights decision in the case of Olmstead vs. L.C. & E.W., my family was at the beginning of our own disability rights journey. My son Rob had just turned two, and we were struggling with “all the things”: health insurance, durable medical equipment, impending surgery, and, most importantly, how to keep Rob in his community. 

Had Rob been born 15 years earlier, he would have been automatically institutionalized. Rob and my family owe a huge debt of gratitude to Lois Curtis, the “L.C.” in the Olmstead case. 

Lois Curtis, a disabled activist and artist, passed away on November 3, 2022, at the age of 55. It was Lois who was the driving force behind the Olmstead litigation. Ironically, the case is perpetually referred to by the name of the Georgia Commissioner, Tommy Olmstead, who opposed community living rights for disabled people, a reference that threatens to erase Lois Curtis from our collective memories.

Lois and Elaine Wilson (“E.W.”) were both subjected to the horrors of institutionalization. Both women were locked in state facilities due to their developmental and mental health disabilities. Lois was determined to get out. Angela Weddle, a disabled artist who has been featured on our blog, reports that Lois said of her unjust isolation and segregation, “I prayed to God. I cried at night so I prayed to God every night in my bed.”

Disabled people have been fighting for their community living rights throughout U.S. history, for the right to stay out of institutions and “asylums.” Medicaid itself did not allow in-home care until 1983 when Katie Beckett’s situation caused Congress to finally establish the first Home and Community-Based Services (HCBS) waiver. The Americans with Disabilities Act (ADA) of 1990 established community living rights, but these were difficult to enforce until Lois Curtis sued the State of Georgia for her freedom to live where she chose, and to compel the State of Georgia to provide her with appropriate HCBS supports.

Lois repeatedly contacted the Atlanta Legal Aid Society to ask for their help, and in 1995, it agreed to take her case, which took four years of effort to reach the Supreme Court. In 1999, the Supreme Court sided with Lois, a decision which put more muscle behind the ADA and the imperative to provide HCBS. The Court said that “people with disabilities like Lois and Elaine have the right to receive the treatment they need[ed] in an integrated setting if that is what they want, if their doctors agree, and if it doesn’t fundamentally change how the state provides services to people with disabilities.”

According to all accounts of her life, Lois Curtis thrived outside of the institutions that had once oppressed her. Lois Curtis was a trailblazer in many ways. Angela Weddle discusses Lois’ passion for art, and her talent for portraiture. You can see some of Lois’ art here. Sara Luterman reports on what Lois’ legacy means for disabled people of color, especially Black disabled women. Luterman also notes the intra-disability bias against those with intellectual and/or mental health disabilities, quoting activist Finn Gardiner, “There’s a divide in the disability community between people with physical disabilities and people with disabilities that affect their cognition or their mental health.” Lois Curtis secured rights for all disabled people, not just some. 

In his tribute to Lois Curtis, disability activist Mike Erwin writes, “Curtis was asked what her wish was for all the people her determined action has helped move out of institutions. ‘I hope they live long lives and have their own place,’ she said. ‘I hope they make money. I hope they learn every day. I hope they meet new people, celebrate their birthdays, write letters, clean up, go to friends’ houses and drink coffee. I hope they have a good breakfast every day, call people on the phone, feel safe.’”

My son Rob, who has developmental disabilities, is now 25. When Rob transitioned from high school, he decided his life goals were to be an artist and an advocate, the path of Lois Curtis. While Rob still faces challenges to community living due to his complex medical needs, he is, nonetheless, surviving and thriving. Rob’s quality of life is a gift from Lois Curtis. 

Rest in power, dear Lois.

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Jeneva and Rob Stone are members of Little Lobbyists. Jeneva is the Little Lobbyists Blog Manager.

Grace Dow (r) with her young sister (l) at Grace’s high school graduation party. Grace wears a red shirt and is using an adaptive walker, and her sister a blue shirt. Both women have dark skin and dark hair. They are in a room set up for a party with red and blue balloons and tables covered with white table cloths.

Adulthood is a challenging time for most young adults and their families. For adults with disabilities and their parents, it’s extra challenging. As an adult with Cerebral Palsy, adulthood has been more challenging than I’d imagined. Luckily, my parents have been supportive. I am lucky to have a large, extended family as well.

My parents made sure that I knew what Cerebral Palsy was when I was young. I knew that I was different from most of my peers when I was growing up. An emphasis was always put on my strengths, and while this was helpful, I wish that I'd had a better understanding of how Cerebral Palsy would affect everyday life. It is essential to let your child know that they may have challenges and limitations as well. I was unaware of how my disability would affect adult milestones such as employment and marriage.

When I was young, I played baseball through a program called Buddy Baseball. I liked being around other people with disabilities. I also played sled hockey as a teenager. I met people with various disabilities through sports. Massachusetts has ample recreation opportunities available for disabled people. I felt like I belonged while playing sports. 

As I grew up, though, I had lots of questions about my future. I knew that I wanted to have a career. I wanted to live on my own one day. I even hoped to get married. I had goals, but had no idea how to achieve them. My parents encouraged me to follow my dreams. They helped me explore different careers, and what I might be interested in doing in the future. In my senior year of high school, I began working with my local vocational rehabilitation office. Unfortunately, their services didn't work well for me. High staff turnover led to me working with three different counslers, and it was difficult to get in touch with them.  Figuring out what kind of career I want to pursue has been a challenge. Since last year, I've run a blog where I write about my experiences as someone with Cerebral Palsy. I eventually want to make writing my full-time job. Writing is one of my passions in life.

Grace Dow (l) and her best friend (r) are seated next to a table with a display about adaptive sports. The trip-fold display has many photos and descriptive text boxes on it. Grace is wearing a white button-down shirt and has dark skin and dark hair. Her friend is wearing glasses, a winter hat and coat and has light skin and light hair.

One of the most important things my parents have done since I have become an adult is help me navigate life as a disabled adult. I knew very little about independent living and what it would look like. My parents made me aware of resources such as the local independent living center. I also received a laptop computer through United Cerebral Palsy. I moved out two years ago, and my parents were nervous. They provided many of the furnishings and other equipment for my apartment which included a bath bench, an electric bed, and a new dresser.

For me, figuring out healthcare has been difficult. I received a new power wheelchair last year, and it was a complicated process that took over a year. My parents helped throughout the process, but they didn’t do the work for me. They helped me write an appeal to my private insurance company and fundraise for the seat elevator. Before turning 18, my parents did all of the advocacy on my behalf. They wrote letters and made phone calls to insurance companies. Back then, I was glad that I didn’t have to figure it out on my own.

My parent's role in my life has changed since I became an adult. They are now supporting me rather than doing things for me. I am fortunate to have two parents who have always been loving and supportive.

The transition to adulthood is a challenging time for everyone. It is even more difficult when your child has a disability. With support, adults with disabilities can live their lives to the fullest.

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Grace Dow is a writer and advocate for those with disabilities. She lives in Massachusetts. In her free time, Grace enjoys reading, watching movies, and being with her friends and family. Please visit Grace’s blog!

Co-founder Elena Hung poses outside the U.S. Capitol [image description: A woman with black hair and a grey tweed coat holds three signs with the Little Lobbyists’ red, white & blue logo on them]

In 2017, Elena Hung and Michelle Morrison, parents of children with complex medical needs and disabilities (Xiomara and Timmy), were worried about the future of health care, given the frightening rumblings out of Washington DC. The two sat down at a kitchen table and put their heads together: How could they get their elected officials to understand how important programs and protections like the Affordable Care Act (ACA), Medicaid, the Americans with Disabilities Act (ADA), and the Individuals with Disabilities Education Act (IDEA) are for families who rely on specialized health care, inclusive education, and accessible public spaces?

A simple plan was formed: collect photos and stories of kids with complex medical needs and disabilities from around the country and take them directly to their legislators. Deliver them in person with their own kids (and their ventilators, oxygen, wheelchairs, walkers, leg braces, feeding tubes, and more in tow) so lawmakers could see first-hand who needs the protection of the very laws and programs under threat. 

Elena and Michelle gathered over 150 stories from other families across the nation to hand out to legislators. Their first visit to Capitol Hill was in June 2017. Five families from the DC metro area gathered for that first Hill visit. The group led by example: Here are our children, and they belong in their communities, they need quality health care and education, and they deserve to be heard by their legislators. 

Co-founders Michelle Morrison & Elena Hung pose with their families outside the Hart Senate Office Building [image description: Four adults and three children pose on the sidewalk in front of an office building sign. The building is made of white marble with large windows.]

The press quickly dubbed the family group, “the little lobbyists,” and the name stuck. Since 2017, Little Lobbyists has become a presence on Capitol Hill, providing an essential perspective on the ACA, Medicaid, Home and Community-Based Services, and many other issues. We have survived and thrived.

Little Lobbyists is now nearly 10K strong on Facebook, and followed by over 16K individuals and organizations on Twitter. Our work is reaching and empowering thousands of families every day. Through our state chapter groups and other outreach, we are also empowering and encouraging advocates at the state and local levels. 

The democratic process works. Little Lobbyists’ success is a testament to it. Through peaceful protests and rallies, through scheduled and impromptu meetings with our federal and state legislators, through Congressional testimony and press conferences, Little Lobbyists has, against the odds, helped secure the Affordable Care Act and Medicaid for children with complex medical needs and disabilities throughout the United States. We have a voice. Democracy works when we use our voices constructively and peacefully to create change.

In these troubled days of 2022, we stand with our allies to protect the bodily autonomy, self-determination, and well-being of everyone, and, particularly, women, people of color, LGBTQ+ individuals, and people with complex medical needs and disabilities.

The June 2022 U.S. Supreme Court decision to overturn Roe v. Wade dramatically limits the Fourteenth Amendment’s civil right to make personal decisions without government interference and upends previous rulings on personal rights including marriage, intimacy, sterilization, medical care, housing, speech, and more. People with disabilities have historically been denied the right to make these fundamental decisions about their own lives, and many are still contested.

Our goal is for the United States to become a place where our government champions policies and laws that protect the civil rights and the future of our children. We are working together to map a path to better health care, education, and community inclusion for every person with complex medical needs and disabilities.

Join us! Our voice is your voice, and your voice is ours.

Some of the Little Lobbyists in 2017 [image description: A group of 8 children, some standing and some in medical strollers pose on a large plaza with the U.S. Capitol building in the distance.]

[Gallery description: Photos of Little Lobbyists families as they spoke at rallies & press conferences, met with congresspersons, and participated in state-level events. Photos were taken inside & outside the U.S. Capitol, inside & outside congressional office buildings, at the U.S. Supreme Court, at special events, and at other locations. Individual photo descriptions appear using the cursor hover feature.]

A young boy holds up a Little Lobbyist sign at a rally on Capitol Hill.

A Little Lobbyists family poses in front of the U.S. Capitol, accompanied by a dog and a drum set.

Two toddler girls pretend to talk on toy phones. A graphic reminds Little Lobbyist supporters to call their members of Congress to protect health care.

A U.S. Senator hugs a young girl wearing a Kamala Harris t-shirt.

The Speaker of the House stands at a podium while a Little Lobbyists founder looks on.

A group of Little Lobbyists families pose in front of the U.S. Capitol after meetings with representatives.

The Senate Minority Leader hands out candy during a Little Lobbyists’ trick or treat day on Capitol Hill.

Little Lobbyists families sit around a table in a congressional office while telling their health care stories to a congressman.

Little Lobbyists members pose with a U.S. Senator after a press conference, with U.S. flags in the background.

An LL mom and her son speak to a U.S. Senator.

A montage of photos of Little Lobbyists families meeting with U.S. representatives is positioned next to LL graphics about supporting health care.

Little Lobbyists families pose on a playground after meeting with their representative.

A Little Lobbyists mom poses with a U.S. Senator.

Little Lobbyists children engage with their congressional representative at a local playground.

A Little Lobbyists mom and her daughter pose with the Speaker of the House of Representatives.

A young boy poses with a U.S. Senator in a meeting room in the Senate.

Two young men who are wheelchair users pose in a hallway of the U.S. Capitol after representing Little Lobbyists at a Senate press conference.

A young boy poses on a tree-lined street near the U.S. Capitol, with the Capitol dome in the background.

A montage of photos of members of Congress reading to Little Lobbyists families during a story-time meeting.

A mom holding a young boy in her arms speaks to a well-known member of the U.S. House of Representatives on a brick-covered city street in Washington, D.C.

A mom and her daughter are positioned next to an LL graphic describing the need for Medicaid.

A young man wearing a Little Lobbyists t-shirt sits in his wheelchair, posing with his dog in front of the U.S. Supreme Court.

A mom wearing a “Health Care Voter” t-shirt poses in front of the U.S. Capitol while hugging her children.

Little Lobbyists families pose in the halls of a House office building with a representative.

A Little Lobbyists family poses with their congressional representative.

Children and parents are seated around a large wooden conference table in a congressional office.

Two young girls are seated at a conference table in front of a marble fireplace. One shakes hands with her Senator.

A group of Little Lobbyists families pose with a U.S. Senator after a meeting on health care.

A montage of photos of Little Lobbyists families speaking out about health care in Congress.

With the U.S. Capitol in the background, a group of speakers stands on a platform at a podium, delivering remarks on health care.

Several Little Lobbyists families pose outside the U.S. Hart Senate Office building, next to its sign.

A founder of Little Lobbyists delivers remarks from a podium in the Capitol building. Flags are in the background.

Little Lobbyists families pose during a press conference, sitting by decorative doors to the room.

A toddler girl in a disability stroller greets a U.S. Senator.

A young girl sits in her wheelchair and makes a phone call while her brother stands next to her. They are in a hall in a congressional office building.

A group of Little Lobbyists families pose in front of the U.S. Capitol building.

A group of Little Lobbyists families, wearing brightly colored LL t-shirts are photographed at a presidential candidate’s campaign rally.

A large group of Little Lobbyists poses with a member of. Congress in front of curtains.

Little Lobbyists pose in front of the office of a U.S. Senator.

Several women pose in front of decorative curtains after making remarks about health care.

Little Lobbyists pose in front of the U.S. Capitol.

Two members of Little Lobbyists speak at a podium in the U.S. Capitol at the launch of a disability rights bill.

Little Lobbyists pose with a new member of the House of Representatives.

A family shakes the hand of a senior member of the U.S. Senate.

A mom poses with her child (who uses a disability stroller) in front of an ambulance during a health care public service campaign.

Several young children are seated at a long legislative dais, flanked by flags.

Little Lobbyists speaking at a rally.

In a black and white photograph, several Little Lobbyists moms pose in front of the U.S. Capitol, during the early days of the efforts to save the Affordable Care Act.

Little Lobbyists hold an impromptu meeting with a member of Congress in a marble-lined hallway.

Members of Little Lobbyists pose for a photo in a beautifully decorated, red-accented room in the U.S. Capitol.

A founder of Little Lobbyists holds multiple LL signs with the LL logo in front of the U.S. Capitol on a beautiful autumn day.

A founder of Little Lobbyists poses with her daughter. Both wear navy blue t-shirts with the LL logo.

A group of Little Lobbyists families in Tennessee pose in a conference room. They wear brightly colored t-shirts with the LL logo.

A mom and her son pose for a photo after a U.S. Senate press conference. The podium and U.S. flags are in the background.

A mom and her daughter pose after a press conference in the U.S. Capitol.

A new member of Congress wearing a vivid turquoise suit bends forward to grasp the hand of a Little Lobbyists child who reaches out to shake her hand.

Little Lobbyists pose in front of the name plaque of a U.S. congressional office.

A young boy is photographed in the hallway of the Capitol.

Little Lobbyists families pose with their legislators after a meeting in California.

A founder of Little Lobbyists holds up a photo of a child who has recently died, while explaining that our families need health care.

A large group of Little Lobbyists pose in Halloween costumes in a hallway of the Hart Senate Office Building during Halloween on the Hill.

A Little Lobbyists mom holds her daughter while posing with the Speaker of the House.

Little Lobbyists share their story in the Senate offices.

A child wearing a Little Lobbyists t-shirt poses with her state legislative rep.

A child receives a handshake from a new member of Congress.

Little Lobbyists family poses with their U.S. representative in a hallway in Congress.

A young girl whose wheelchair has been turned into a beautiful jellyfish Halloween costume poses with her parents and a member of Congress.

A new member of Congress signs an autograph for a Little Lobbyists teenager.

Little Lobbyists at a press conference.

Two young boys smile while riding the Senate train underneath the U.S. Capitol.

A group of Little Lobbyists in Halloween costumes speak in a hallway of a congressional office building with a legislator.

A father and son dressed as superheroes accept a Halloween treat from a member of Congress.

A young woman representing Little Lobbyists speaks at a podium marked with a “Lower Drug Prices” sign outside in front of the U.S. Capitol.

Little Lobbyists visiting a Senate office.

A young boy wearing a superhero costume speaks with a member of Congress in a hallway in one of the congressional office buildings.

A mom holds a young girl who gives a legislator a high-five.

Little Lobbyists kids pile around a large conference table during a Halloween on the Hill day.

Little Lobbyists at a night time rally in front of the Capitol.

A young boy sits on a patterned carpet with state flags after a state legislative press conference.

Senator at the table with Little Lobbyists.

Congressman kneels to meet a Little Lobbyists child.

Little Lobbyists teen speakers before a rally.

Two young boys play near a podium with a legislative seal. American flags are in the background.

Little Lobbyists on a holiday visit in a Senate office.

Several members of Little Lobbyists, wearing colorful LL t-shirts, pose in front of the U.S. Supreme Court, lit from within in the early evening.

Large group of Little Lobbyists families with the family of a congressperson.

A Congressman listens to Little Lobbyists teens.

Little Lobbyists members speak at a press conference inside the Capitol.

A Senator high fives a Little Lobbyists teen after his speech.

Little Lobbyists on the steps of the Capitol at a rally with members of the Senate.

A young boy sitting in a wheelchair and his sibling stand in front of a congressional office door.

Little Lobbyists family poses with a U.S. Senator. An American flag stands to one side.

Member of Congress at a local playground with Little Lobbyists families.

Little Lobbyists families sit and stand along a carpeted hallway in a congressional office building.

A mom holds her young son while they smile for the camera with a new member of Congress.

A Little Lobbyists family poses with the Speaker of the House in a wood-paneled meeting room.

In a marble-lined hallway of a congressional office building, a dad and his kids pose with a U.S. Senator.

Standing before decorative doors in a congressional meeting room, a mom with a stunning tattoo on her arm holds her young daughter while posing with a U.S. Senator.

The then-U.S. Senate Minority Leader distributes Halloween candy to a group of children in his office.

A young girl who is a wheelchair user poses with a U.S. Senator who is also a wheelchair user.

Two children dressed in Halloween costumes wait for a U.S. congressman to sign his autograph.

A Little Lobbyists family poses with a U.S. Senator.

Two Little Lobbyists moms pose with a new member of Congress in a white-brick lined hallway.

Little Lobbyists families and members of the House and Senate standing together on the Capitol lawn on a beautiful, sunny, summer morning.

L to R, Julie Beckett, Nora Wells (Exec Dir of Family Voices) and Elena Hung. [image description: Three women wearing professional clothing and wearing name tags pose at a conference.]

Little Lobbyists honors the passing of an advocate who changed our children’s lives: Julie Beckett, the mother of Katie Beckett, for whom a crucial Medicaid waiver is named. Julie and Katie Beckett became advocates for people with disabilities because they wanted justice and a good life for Katie and all disabled people. 

Julie wrote, “As many parents will attest, there sometimes comes a moment in parenting where you discover strength you didn’t know you had — all because your child needs you.” We at Little Lobbyists have felt that same call. 

Little Lobbyists Executive Director and Co-Founder Elena Hung knew Julie Beckett and was, understandably, awed:

“Julie always spoke about Katie as her partner in advocacy. The last time I saw her, I was struck by how many of her stories and memories were about ‘we’ and ‘us’ and ‘Katie and I.’ It was never just about Julie or Katie, but about the two of them together. It's something that really spoke to me as I feel the same way about Xiomara and why I am so adamant about describing Little Lobbyists as a ‘family-led’ organization and not ‘parent-led.’ In my opinion, I think this is a defining narrative of Julie's advocacy: fighting for justice with her daughter and not for her.”

Julie and Katie were founders of Family Voices, whose mission is to promote “partnership with families–including those of cultural, linguistic and geographic diversity—in order to improve healthcare services and policies for children.” Of Julie’s passion, Family Voices said, “May it inspire each of us to recognize the power of our voices to improve the world around us.”

Julie’s daughter Katie was born in Iowa in 1978. At the age of four months, Katie contracted viral encephalitis, which caused complex respiratory problems and partial paralysis. Katie needed a ventilator to breathe, and, according to Medicaid rules at that time, people who needed a ventilator could only be cared for in a hospital. Katie could not be cared for at home, where she belonged. Within our lifetime, disabled children were still automatically institutionalized.

For three long years, Julie fought the state and federal governments, seeking a way to bring Katie home, where she would be surrounded by love and where she would ultimately thrive.

Family Voices photo: Julie and Katie (as an infant) [image description: A black and white photo of a woman with long dark hair holding an infant who has a tracheostomy tube. Another woman, whose face is not visible, holds a toy out to the infant.]

Julie and Katie joined the same cause disabled activists had been working on for decades: the right to live in their communities with dignity and respect, and to live full and happy lives. When Medicaid was established in 1965 as part of the Social Security Act, the program guaranteed that people who needed 24/7 care, i.e., nursing-level care, could receive it in an institution or hospital with no waiting list. But no one had the right to receive care at home. 

Julie Beckett reached out to everyone she knew. She told Katie’s story over and over again. Because of Julie’s refusal to give up, in 1981 Katie’s story caught the attention of new president Ronald Reagan. The president saw the Beckett family’s plight as an issue of burdensome federal regulations. He also recognized what the disability community had been saying for many years: home care costs far less than institutional care. 

In 1983, Congress amended the Social Security Act to allow states to “waive” Medicaid’s institutional care restrictions to provide home care. Katie Beckett came home. Katie Beckett lived in her community until she passed away at the age of 34. 

Today, all 50 states have a “Katie Beckett waiver,” which allows eligible children to live with their families, in their communities with the health care and adaptive supports they need. This waiver saves state and federal governments hundreds of millions of dollars annually, but there are still 800,000 people on state waiting lists to receive home care. When you live at home, surrounded by your loved ones, your health outcomes are better–there are fewer costly hospital stays. Julie Beckett wrote, “This waiver meant so much for us and for Katie that I proudly display “waiver mom” in my email address to this day.”

But, as Julie and Katie knew, the rights of disabled people are constantly under attack. While Reagan recognized the value of home care, today’s Republicans have tried, time and again, to gut Medicaid and turn back time to the ugly days of institutionalization. 

Our work is not yet finished: To this day, neither states nor the federal government have made Home and Community-Based Services (HCBS) a right instead of a “waiver” or “demonstration” program. For how much longer do we need to “demonstrate” that our disabled loved ones, both children and adults, survive and thrive at home, where they belong? 

It’s been nearly 40 years since Congress created these essential waiver programs. President Biden’s Better Care Better Jobs Act would provide enough funding to reduce or eliminate agonizing waiting lists, raise home workers’ wages, and create more jobs. 

Julie and Katie Beckett knew they had helped to create change, but they also knew their work wasn’t finished. We all must fight on. “You are not required to complete the work of perfecting the world, but neither are you free to abandon it.” 

Lauren & her daughter Ellie [image description: A mother and daughter with light skin and blond hair pose in front of a leafy backdrop. The daughter has her arms around her mother’s waist. She wears a sage-green dress and turquoise-frame eye glasses. The mom wears a navy blue dress with a tiny white pattern.]

We find ourselves celebrating our third consecutive World Down Syndrome Day (WDSD) against the backdrop of a global pandemic; though, undeniably, something has recently shifted. While much of the world, and certainly much of the United States, has decided that it is time to turn the page, close the book, and go back to “normal,” we are acutely aware, having loved ones with Down syndrome, that it isn’t that simple.

Covid-19 continues to post serious risks to people with Down syndrome and other disabilities, including the unfortunate likelihood of new variants. We also face the heightened challenge of protecting vulnerable members of society when commonsense public health measures like masking and vaccinations have become political weapons wielded in school board meetings and state legislatures.

We must also acknowledge all that has been lost, the trauma we have endured, and the long-standing inequities that have been revealed. School closures and virtual learning have had a devastating and disproportionate impact on the education of school-age children with disabilities including Down syndrome, with many families reporting significant learning loss, struggles to access greatly needed compensatory services, and increasing pressure to move their students with Down syndrome to more restrictive school placements. The situation is dire. 

The serious labor shortage of Direct Support Professionals, a major problem before the pandemic, has now risen to crisis levels, threatening the ability of adults with Down syndrome and other disabilities to participate fully within their communities. And with life-saving therapies and critical healthcare resources in short supply throughout the  pandemic, the healthcare discrimination faced by individuals with Down syndrome and other intellectual/developmental disabilities became more apparent than ever.

And yet, on this World Down Syndrome Day, we find much to celebrate. Our own daughters, Hope and Ellie, whose insistence on living in the moment – this moment right now – remind us of our own remarkable resilience as individuals, families, and communities. Their ability to notice joy in each moment and their grace in both acknowledging and experiencing the hurt and confusion, too, gives us, as their parents, the ability to experience such joy and grace as well. The Down syndrome community has found new ways, amidst great loss and isolation, to connect, maintain relationships, establish new routines, and learn new skills. 

Liz & her daughter Hope [image description: A mother and daughter, both with light skin, pose outdoors. Behind them are green trees and blue sky with clouds. Both mom and daughter have dark hair and wear glasses. They are depicted from shoulders up.]

This year, we also celebrate our first year as co-chairs of the Maryland Down Syndrome Advocacy Coalition (MDAC), an organization that brings together self-advocates, families, professionals, and the five Maryland Down syndrome organizations, to advocate for legislation and policies that will improve the lives of individuals with Down syndrome across the state of Maryland. A year ago today, we came together as co-chairs and partners to revitalize MDAC in this moment of challenge and change. This model of statewide Down syndrome coalitions has been successful across the country and we are honored to be a part of the work here in Maryland as we partner with other advocacy organizations on a variety of issues impacting the disability community.

MDAC currently has two workgroups —  a K-12 education workgroup and a workgroup focused on the issues faced by adults with Down syndrome. Each workgroup meets monthly and, with the ease and accessibility afforded by virtual meetings, we have representatives from across the state ready to share their stories, connect with their legislators, and unite around issues of concern. We are currently focusing on issues such as supported decision making, self-directed services, and inclusive education, particularly for students with significant cognitive disabilities.

We rely on the support of the National Down Syndrome Advocacy Coalition (NDAC), a  member service of the National Down Syndrome Congress (NDSC), both as individual advocates and for guidance and support for our work with MDAC. We urge all of you to become more deeply involved in your own advocacy efforts by finding organizations and other advocates in your own states with whom you find common cause. We are grateful for the hope and energy we feel from coming together to tell our stories and work toward solutions to problems facing our community. 

This World Down Syndrome Day, despite the challenges of the ongoing pandemic, we celebrate our children and feel fortunate to be part of a resilient Down syndrome community. We look forward to another year of organizing, advocating, and working shoulder to shoulder with self-advocates, families, Down syndrome organizations, and other advocates and organizations in the wider disability community to advance meaningful change for Marylanders with Down syndrome. 

Forward with hope,

Liz and Lauren

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Liz Zogby is the co-lead of the Maryland Down Syndrome Advocacy Coalition and a member of the Down Syndrome Association of Maryland (DSAmd), and leads advocacy efforts for the annual Step Up for Down Syndrome Baltimore walk event each October. Liz is the outreach coordinator for the Trace R&D Center at the University of Maryland, an accessibility research center that focuses on the intersection of information and communication technology and disability, as well as a freelance writer and researcher with particular expertise in survey research. She is the mom of three, including her youngest Hope (11) who has Down syndrome, and lives in Baltimore City.

Lauren Ochalek is a Down syndrome advocate, nurse educator, cancer thriver, wife, and mom (her oldest, Ellie, has Down syndrome). She is the co-lead of the Maryland Down Syndrome Advocacy Coalition and serves on the Board of Directors for the Down Syndrome Association of Maryland. Her heart beats for disability rights, legislative advocacy, and promoting meaningful inclusion.

Agata’s son enjoying time at the lake. [image description: In the lower right corner, a young boy sits with his back to the camera. He has light skin and short blondish hair. He is looking out over a lake surface that is rippled and dappled with sunlight. There is a branch with small green leaves in the lower left corner, and there are tiny water snakes in the middle of the photo.]

As the mother of a medically complex child, I was stunned by a recent Facebook post by a scientist friend who is cautiously advocating for dropping mask requirements in schools. He’s posted the recently released “Urgency to Normal” toolkit. My friend reminds us that he “was all-in at the beginning,” that he even got heckled at a school board meeting when he defended mask mandates. But, he says, he’s not sure he would push for school masking now. 

I’ve lived through the pandemic in Indiana, where many people refuse to wear “face diapers” and spread conspiracy theories about “plandemic,” horse dewormers, and microchipped vaccines. County councilmembers advocate against vaccines. Indiana’s vaccination rate hovers just over 53%. My county has a 47% rate. In Montgomery County, where I live, masking in schools seems to be the only mitigation tool we have, since our shops, restaurants, and churches are crowded and mostly unmasked and unvaccinated.

My scientist friend writes that Omicron is both more contagious and milder than previous variants. There’s only weak evidence for masking in school settings, he says. Everyone 5 and older has had a chance to get vaccinated, and the risks for younger kids are minimal, he says.

But what about children like mine? Those who are medically complex? Those who are disabled? Those too young to be vaccinated? What about the most vulnerable among us, the immunocompromised or those with comorbidities? Is masking properly in public places too much a sacrifice for the community as a whole to protect the most vulnerable during future Covid surges?  Scientists say Covid won’t be going away any time soon.

I am struck by the toolkit’s lack of consideration for people like my child. The name of the advocacy group itself, “Urgency to Normal,” has a eugenicist tone. I find the “healthy children don’t have to worry” rhetoric troublingly unconcerned with children who cannot rely on their own immune systems. The toolkit’s authors don’t seem to consider questions of equity in terms of disability.

I, myself, grapple with the implications of face coverings for children who have hearing impairment and those learning to read and speak. This is why I am advocating for nuance rather than rigidity or a one-size-fits-all approach to Covid. 

Agata in the classroom. [image description: A woman with light skin and short blond hair wears a black jumper over a teal long-sleeved shirt. She has a large orange scarf draped around her neck, and she wears large bronze-colored earrings. She is gesturing toward a large chalkboard in the background.]

Why not change masking requirements on a school-by-school or county-by-county basis when community spread reaches, say, a 10% threshold? According to the CDC, that’s a “medium” transmission rate. However, the CDC only recommends schools require masks when the transmission rate is “high,” which is a 20% transmission rate–and CDC rates are linked to hospital admissions and capacity. As we know by now, hospital admissions are not the earliest indicator of high community transmission rates. A “medium” transmission rate more accurately reflects high community spread. We also ought to consider wastewater testing and comprehensive school-based testing as  important triggers for mask requirements.

Many people are concerned about students who are learning to read, or teachers in classes with hearing-impaired students. Removing masks puts these students at risk during high transmission periods. Schools should invest in the many anti-fog, clear panel masks now available. 

We don’t have to follow rigid guidelines, but we need to take into account the safety and well-being of all students, including the large portion of them who are immunocompromised. Are deaths or the real threat of long Covid among young  children,  people with disabilities, and immunocompromised persons admissible collateral damage in this “Urgency to Normal” drive? Shouldn’t the toolkit’s authors wrestle with such complex issues, too?  

If more people were properly masked in public spaces, children and adults with disabilities could participate in society without fearing for their lives. Since this is not happening, let’s focus on safety in schools, one of the most essential places for our children to thrive.

Disability activists fought for a redefinition of “normal” even before the pandemic to make our society inclusive of those with impairment. It’s time we collectively address what “normal” means, whom it excludes, and why we’re ok excluding large groups of both vulnerable and valuable people from taking part in public life. 

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Agata Izabela Brewer is a Polish-American scholar, writer, teacher, and activist. She chairs Immigrant Allies, a branch of Humans United for Equality, a non-profit organization in Indiana. She is also a Court Appointed Special Advocate.

Disability Day of Mourning is an annual commemoration held on March 1st to remember the lives of people with disabilities murdered by their caregivers, particularly those killed by parents and other family members, and to demand justice for their deaths. Our executive director, Elena Hung, spoke at today’s vigil hosted by the Autistic Self Advocacy Network. To learn more and find a vigil near you please visit: https://autisticadvocacy.org/2022/02/2022-vigil-sites/

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I am here today to honor and remember those in our community who have died at the hands of their parents or caregivers. 

We see this unforgivable and criminal pattern play out over and over.  A parent kills their disabled child.  A caregiver murders their disabled family member.  And instead of accountability, the murderers are often met with sympathy.  Instead of justice, the victims are often forgotten.  

This is unacceptable, and it must stop.

I am Elena Hung, better known to some of you as Xiomara’s mom.  Xiomara is seven years old and in the second grade, attending school via virtual learning.  Xiomara is the joy of my life, and I am so lucky I get to be her mom.  She is happy, kind, clever, funny, and a little bit naughty.

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

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 that is a world where our disabled children know without a doubt from our words and our actions that they matter, that their lives have value, and that we love them.

Here’s the thing:  Parenting a disabled child is hard, but that is because parenthood – done right – is hard.  Parenting a disabled child is also joyful, and that is because parenthood – done right – is joyful. 

When we only see parenting disabled children as hard but not as joyful, we are failing.  I am speaking to you on this Disability Day of Mourning because we are failing our disabled children, and we must urgently course correct.

Let’s commit to holding accountable the parents and caregivers who kill and murder the disabled people who trust them. And let’s honor the humanity of our disabled children and friends.  

Let’s support them, believe them, love them, and work towards creating a world that is worthy of them.

A row of candles lit in the darkness, reflected in the smooth surface below.

Brian’s brother, Dan. [image description: A man with light skin and close-cropped dark hair wears a white and orange football jersey. He is seated in a wheelchair that is decorated with orange crepe paper. He’s smiling. A shelf filled with house plants is behind him.]

Danny loved to tease me. I was his younger brother by four minutes, a fact he never let me forget. If you asked him, “Danny, who’s ugly?,” without fail he’d yell “I-an!”-- his version of my name. When I sang to him, he heckled me with a long blasted “Ahhhhh!” drowning out whatever melody I had. 

Danny had cerebral palsy and intellectual disabilities. He lived at home with us until he was 24, until my mother did not have enough help to provide the 24/7 care he needed. 

If Danny had had access to the level of Home and Community-Based Services (HCBS) that President Biden has proposed in The Build Back Better Act, he could have continued living at home, where he belonged.  

In 2005, when we were 22 years old, I worked as Danny’s home health aide before I left to teach English in China. I cherished those hours with my brother, falling into the rhythm of his needs. I loved pushing him through the mall, where I’d give him wheelies down the department store aisles. I loved taking him for ice cream, spooning him bite after bite and hearing him say, “More.” I loved taking him to the movies, where he’d crack up at all the dirty jokes he wasn’t supposed to “get.” I’d spent four years in college but here was another body of knowledge: how to help him brush his teeth hand-over-hand, how to position him for bed with a pillow under every stress point, how to translate what he meant by reading the tone of his 12 words and physical expressions. He made me feel more useful than I’d ever felt in a classroom.  

I started working for Danny because my mother had difficulty finding help, due to a lack of Home and Community-Based Services in Ohio, where we lived. My mother provided Danny’s care by herself for the first 18 years of his life. When Danny qualified for Supplemental Security Income (SSI), Ohio only approved help for showering and feeding, about 17 hours per week. Often, the aides wouldn’t show up. I wasn’t sure how my mother would manage after I left for China. I thought about canceling my overseas plan. 

But she told me not to worry: “You need to have your adventure.” Getting on that plane was one of the hardest things I’ve ever done.

In China, over the phone, my mother told me that Danny wasn’t doing so well. The aides often didn’t show up, and the ones who did often seemed disinterested. For one guy, she timed it: 40 minutes before he said one word to my brother. 

Then my brother’s swallow reflex failed and he got a feeding tube, which required a whole new level of care. There were not many home health care workers who could handle his feeding tube. Four months later, my mother reached her breaking point and made the difficult choice to transfer him to a group home. 

From left to right, Danny, their mother, Brian. [image description: Two young boys in matching striped shirts wear cone-shaped party hats. One is seated in an adapted high chair, the other stands next to him. Their mother wears a pink sweater and poses between them, holding out a cupcake with four lit candles.]

I returned from China just after he moved. It killed me that I wasn’t there to help with his transition. One night, he came home and was his normal happy teasing self until it was time to go back. In the kitchen, as it grew late, he sensed it: he got stiff and his neck strained against his head rest. 

I asked him, “What are you mad about, Dan?”

“Mama,” he said and then yelled. He knew he was going back. My mother stood in the kitchen, doing the dishes, trying not to cry.

I said, “Danny, listen. We have to grow up. We can’t live with Mom and Dad forever. We have to move out and get our own places. Our sister had to do it. I had to do it. You have to get your own place now, too. Dan, we are still a family.”

From that day forward, Danny seemed to accept his new home. He let me help him through his transition, and I was proud I could finally be there for him. But in retrospect, when Danny yelled at my mother that day, he was right: he should’ve been allowed to live at home. Although he handled his transition with grace and maturity, he wanted to live with his family. But the lack of long-term Home and Community-Based Services made his transition inevitable. 

At the group home, he was exposed to neglect: after an aide failed to check on him, he fell out of his bed. He did not feel safe. Danny died in 2011, due to complications of pneumonia and a medical mistake.

If Danny had had access to the level of HCBS that President Biden proposed investing in, and that the House passed as part of the Build Back Better Act, he could have continued living at home, where he belonged. The Build Back Better Act would increase the care workforce by creating better jobs for home health care workers: raising wages and providing better training. It would create thousands of new jobs and allow millions of unpaid caregivers to get the support they need. It would save lives.

My twin brother passed away in 2011 but I still have his messages on my phone, when he called to make fun of me. “I-an!,” I still listen to him say. Danny deserved better. People like my brother should be able to stay at home, where they can tease their little brothers and be with the family they love. We need the Senate to fulfill President Biden’s promise to our families and finally pass the Build Back Better Act.            

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Brian Trapp is a fiction and creative nonfiction writer. He teaches creative writing and disability studies at the University of Oregon and is currently a Steinbeck Fellow at San Jose State University. He is at work on a novel and a memoir, both based on life with his twin brother, Danny. If you’d like to read more about Dan, check out "Twelve Words" and "You Robbie, You Baka," both available online. Follow Brian on Twitter at @btrapperkeeper.

#1 Vaccines!

Vaccinations for COVID-19 began to roll out at the beginning of the year and we’ve worked hard to raise awareness and advocate for all our kids to be protected. We’re hoping shots for our littlest lobbyists and boosters for big kids will be available soon. Please keep doing all you can to protect yourself, your family, and all of us - wear a mask, get vaccinated and boosted as soon as you can! To learn more, visit vaccines.gov.

In the photo: Little Lobbyists Simon gets his COVID-19 vaccine!

#2 Virtual Meetings, Real Advocacy!

We love introducing legislators to our kids, and COVID didn’t change that. Like so many others, we took our work online and are continuing to make sure kids with complex medical needs and disabilities have a seat at the (virtual) table.

In the photo: Little Lobbyists Taryn and her mom Dawn meet with Senator Sinema and her Team.

#3 Congressional Testimony!

The American Rescue Plan included many provisions to help all our families, like the Child Tax Credit, funding for home and community based services for people with disabilities, and subsidies to make health insurance more affordable. Our Director of Communications, Laura LeBrun Hatcher, was invited to testify in the House of Representatives to explain why these provisions are so important, and why they must be made permanent.

In the photo: Little Lobbyists Simon’s mom and Director of Communications Laura LeBrun Hatcher provides testimony to the U.S. House of Representatives.

#4 Celebrating the Americans with Disabilities Act!

This year the ADA turned 31 and Little Lobbyists Executive Director Elena Hung was invited to a celebration marking the occasion in the White House Rose Garden. At the event, President Biden acknowledged that there is still much work needed to remove barriers to freedom and equality for Americans with disabilities and he affirmed his administration's commitment to advancing Disability Rights. Watch the ceremony here.  

In the photo: The president surrounded by the Vice President, disability advocates, Speaker Pelosi and other leaders mark the anniversary of the ADA.

#5 Meeting with the Vice President!

Twice this year, Little Lobbyists had the opportunity to meet with Vice President Kamala Harris to represent our families and discuss what our children with complex medical needs and disabilities need to survive and thrive. Communications Director Laura LeBrun Hatcher joined the Vice President at an event celebrating the Affordable Care Act and Little Lobbyists Claire’s mom Jamie Davis Smith sat down with the Vice President at her own kitchen table to discuss the importance of caregiving. Read Jamie’s account of her experience here.

In the photo: Vice President Kamala Harris sitting at the kitchen table for a conversation on caregiving with Little Lobbyists Claire’s mom Jaime Davis Smith.

#6 Care Can’t Wait!

President Biden’s agenda calls for a major investment in our country’s infrastructure — including social spending on health care, education, and caregiving as part of the critical foundation our country must support to remain strong. The social infrastructure bill is called the Build Back Better Act. Working closely with Senator Casey and Representative Dingell, Little Lobbyists provided input on the policies and funding our loved ones with complex medical needs and disabilities need to thrive at home instead of being forced into dangerous institutions. For the past several months we’ve advocated alongside many other organizations to get this historic legislation passed because for our families ”Care Can’t Wait!” To learn more, visit www.littlelobbyists.org/carecantwait.

In the photo: Activists lit up the night with “Care Can’t Wait” signs in front of the Capitol following a 24 hour rally.

#7 Powerful Partnerships!

In a year full of historic challenges and opportunities, we worked collaboratively with several organizations to advocate for the passage of the Build Back Better Act including: the Arc, Be A Hero, the American Association of People with Disabilities, the Autistic Self Advocacy Network, Caring Across Generations, the Center for American Progress, MomsRising, the National Domestic Workers Alliance, SEIU, and many more. In addition, we partnered closely with Ady Barkan’s organization Be A Hero to help share our families’ stories about the importance of home and community based services on a national platform.

In the photo: Director of Community Engagement and Little Lobbyists Sara and Emma’s mom Stacy Staggs shared her family’s story nationally through our partnership with Be A Hero.

#8 A “mom to mom” conversation with a U.S. Senator!

Executive Director Elena Hung had a mom to mom conversation with Senator Maggie Hassan. Elena and the Senator were both led to national advocacy through their experience as parents and caregivers of disabled children. They discussed the importance of Medicaid home and community based services and the policies we need to ensure our children have the civil rights they deserve. Watch the video here.

In the photo: A screen shot from the video call between Senator Hassan and Little Lobbyists Xiomara’s mom and Executive Director Elena Hung.

#9 The Build Back Better Act passed the House!

The Build Back Better Act includes historic investments in home and community based services, access to health care, education, childcare, paid leave, lower drug costs, and more that our families need. Our Executive Director Elena Hung was invited to the White House with a small group of disability advocates to support the final push to the House vote. Our work to get this bill passed is far from over – the legislation is currently in the Senate and intense advocacy will be needed to get it over the finish line. 

In the photo: Disability rights leaders, including our Executive Director Elena Hung, with a White House Associate Director beside the White House.

#10 Little Lobbyists are invited to the White House!

We work hard but also remember to take time to celebrate. At the invitation of the President and the First Lady, we spent some time viewing the beautiful holiday decor at the People’s House. Masks were worn and social distancing observed, but the lights shined just as bright. We appreciated the care taken by the Administration to ensure this year’s subdued holiday celebrations were as COVID safe as possible ahead of the Omicron surge.

In the photo: Members of the Little Lobbyists team, Elena Hung, Laura LeBrun Hatcher, and Jeneva Burroughs Stone stand in front of a stairway lit with candles leading to a festively decorated entrance to the White House before they tour the holiday decor.

In the coming year, Little Lobbyists will keep showing up to represent our families and make sure ALL kids with complex medical needs and disabilities have a seat at the table to inform the policies that affect them. To be a part of our ongoing advocacy, follow us on social media, share your story with us, and if you can, please consider donating to support our family-led and volunteer-powered work. 

Wishing everyone a happy and healthy 2022!

Dear Josephine,

Yesterday your father shared the news that your wonderful mom, Samantha, passed in her sleep early Christmas morning. Though we knew your mom had been battling cancer for a long time with incredible bravery, we still can’t believe we won’t see her again and our hearts are broken. We know our grief and shock are nothing compared to the loss you and your dad are facing. 

Over the next days, months, and years many of those who knew and loved your mom will share stories about her so you may know her better through their memories. They will tell you about her childhood, college escapades, and days as a daring derby girl. They will reflect on her love for your dad, her joy in motherhood, her professionalism at work, her commitment to social justice. 

Those of us who knew your mom through her advocacy with Little Lobbyists have been sharing our memories with one another, paying tribute to the wonderful person she was. We’d like to honor your mom’s memory by telling you how much we loved her and how – because of her love for you – she worked to change our country for the better. 

Your mom met up with us in 2017 when the political party in power was trying to destroy our country’s health care protections, threatening our kids with complex medical needs and disabilities access to the care they needed to survive and thrive at home instead of living in a medical facility or institution. (We hope by the time you read this letter that idea sounds absurd, and that our country finally guarantees health care as the right your mom and all the Little Lobbyists believe it is.) That summer, a small group of families – your mom and dad included – knew it was up to us to protect all our children.  We showed up on Capitol Hill to tell our stories. A reporter who wrote about our families gave us the name “Little Lobbyists” in honor of kids like you.

To paraphrase our co-founder Elena (who befriended your mom a year earlier in the local trach group), your mom knew there wasn’t a thing she’d change about you, but there were countless things she would change about our country for it to become the place you need to thrive. She took you with her to Capitol Hill, so members of Congress could meet you and see whose life was at stake in the votes they took. She wanted legislators to understand that a better future is possible for ALL of us with the right policies. 

Your mom’s warmth opened the door, and her determination got you both through it. She made sure you met future and past presidential candidates, including our first female Black and Asian Vice President, so you’d be represented by those in power. She gave powerful speeches in the Capitol and countless interviews to reporters, telling your family’s story over and over again. 

She never, ever gave up. 

Everyone who met your mom loved her. She radiated warmth and kindness and could make the most nervous and new-to-advocacy feel like they belonged. Even in serious situations, she brought joy with her — dressing you up in the most adorable tiny pink Doc Martens, trick-or-treating in the Senate, celebrating victories small and large. She kept in touch. She always showed up. 

Little by little, you and your mom and all our Little Lobbyists families changed hearts and minds. We saved our health care protections and are working to create the change our country needs to be worthy of you as you grow. Our deepest sorrow is knowing you will grow up without your mom beside you, where she most wanted to be.

As you face the challenges and triumphs in your future, know that our Little Lobbyists family will always be here for you. Most of all, know how much of your mom is part of you. 

Your smile has your mom’s open, gracious warmth. Your deep brown eyes have her joyful, mischievous sparkle – always ready to get into “good trouble.” Most of all, you have her determination. Your mom frequently beamed with pride when sharing your determination to reach each new milestone – eating, walking, climbing – and we all knew your spirit came from her. 

Dear Josephine – stay determined. Stay open and warm, joyful, a little mischievous, and always ready for good trouble. We promise we will keep showing up for you and all our families – in honor of your mother’s indomitable spirit – to create a country worthy of us all.

All our love, always, 

Your Little Lobbyists family 

---

“The minute I met her I felt like we’d been friends forever. She was a bright and fierce force of nature. So much so that when you came within 50 feet of her she had her own gravity that pulled you in. She was a badass, an amazing friend and a person who always told it like it is.” - Tasha

“Sam was an amazing friend and mom. You could always depend on her, and we could talk for hours. She used to tell me so many stories about Jo, and man, she loved that kid. Sam was love and fire and determination- an incredible person.” - Caroline

“Sam was one of the first moms to welcome me into the Little Lobbyists crew. I remember sitting with her at an event and asking her a million questions about her home health nurses. She’s a big part of the reason I’m about to start back to work as a pediatric home health nurse.” -Alison

“Sam was so fun, and so kind. I’ll never forget how she drove over an hour to come to my daughter’s skateland fundraiser for Lymphoma. She showed up with a huge smile and an even bigger hug. She was wearing her derby girl best and had attached rainbow lights to Jo’s wheelchair. It was pure joy to watch her fly around the rink.” - Laura

“I was immediately impressed with Sam's sense of humor and her dedication to saving health care. No matter what, Sam was up for advocacy, even as she and Jo each dealt with their medical needs. I wish I'd had longer with her.” - Jeneva

“Sam was my favorite kind of person from the moment we met: equal parts kind and badass, thoughtful and spontaneous, funny and serious. She was a bold leader who knew she was part of something much bigger than herself, always making others feel welcomed. Truly one of a kind. We bonded over our feisty daughters (often joking about how they were the boss of us) and we never forgot what was truly important.” - Elena

Art by Rob Stone, yarn on ceramic tile. [image description: Pieces of yarn (dark & light blue, light & dark green, red, orange, and yellow) have been dropped in tangled loops on a glossy white ceramic tile and glued into place.]

I’ve been thinking about trauma lately. Our children and our families have been through so much over the last year and a half--not only the pandemic itself, but the insurrection at the U.S. Capitol; the natural disasters caused by climate change; the U.S. withdrawal from Afghanistan; the refusal of some Republican leaders to support mask mandates, vaccinations, and public safety; and the mounting Covid death toll, which has now surpassed the total U.S. deaths from the 1918 flu pandemic.

After over two decades of coping with the medical and social trauma both Rob and my family have experienced, I thought I knew how to manage. A therapist once advised me never to think more than six months ahead while going through a crisis stage. That window is manageable--I can make reasonable plans, but avoid catastrophizing about unknowns. 

All of us have our tricks and tips to get through the day, the week, the month, the year: Meditation, a glass of wine now and then, time with friends and family, a funny movie, and so on.

That is, I imagine many of us living with complex medical needs and disabilities are used to the reality that our lives are often subject to crisis and uncertainty. But, lately, our inner and outer worlds have been more than disrupted, they’ve been beaten up beyond recognition. 

And, now, another pandemic winter is upon us, with only the glimmer of a pediatric vaccine coming at some point in the next few months. 

In any discussion of trauma, you hear a lot about the body’s “fight or flight” response. Under our current conditions, we can neither “fight” an invisible virus (as well as all the other problems our society faces), nor flee. We may often be frozen with fear, uncertainty, indecision. 

This is typical. What no one told me until I began studying trauma is that “fight or flight” is only two-thirds of the range of biological and psychological response to trauma. The third is “freezing,” which some clinicians call “surrender.” If you cannot fight back or flee a dangerous situation, your primordial brain is primed to freeze. This often allows a person to survive a crisis period. In the animal world, freezing may deter a predator or distract it long enough that the organism under attack finds a means of escape.

Most of what’s going on in the world right now appears beyond our control; thus, we freeze. Recovering from a single incidence of trauma is difficult; recovering from a series of traumatic events is even harder, especially when the trauma is ongoing.

But there are things we can do. Trauma experts consistently identify a starting point for moving forward: establishing and maintaining a sense of safety. Your sense of safety may come from a place, a person, or a sensation. Identify that. Build upon it. Retreat to it whenever necessary. Help your children identify their own safe spaces.

From a place of safety, you can begin to establish some sense of control. Identify what you can and cannot control, big or small, consequential or seemingly insignificant. It may make you feel better. Keep adding to and building upon the big and little things you can control--decisions you can make, actions you can take, independence you can achieve.

That’s how to begin finding equilibrium (or trying to) in our upended world. 

And finally, figure out what human connections matter most to you. Devote your energy to them. And don’t forget advocacy! “There’s strength in numbers” aren’t empty words. Judith Lewis Herman, a leading trauma researcher, says, “[People] who recover most successfully [from trauma] are those who discover some meaning in their experience that transcends the limits of personal tragedy. Most commonly, [people] find this meaning by joining with others in social action.” 

Now breathe. 

Further Reading:

• Judith Lewis Herman, Trauma and Recovery: The Aftermath of Violence--From Domestic Abuse to Political Terror.

• Peter A. Levine, Waking the Tiger: Healing Trauma. 

• Bessel Van der Kolk, The Body Keeps the Score: Brain, Mind, and Body in the Healing of Trauma.

---

Jeneva Stone is the Little Lobbyists blog manager. She is also a writer.

Rob and his disability rights button collection. [image description: A business card on a brown wood table shows a man with light skin sitting in a wheelchair on a grassy hill overlooking the city of Washington DC. He wears sunglasses and a Washington Nationals baseball hat. Four round advocacy pins are placed near the business card: “Meaningful Work Community Inclusion Transcen.org; Little Lobbyists (with their star child & heart logo), “Disability Rights are Civil Rights”; “Health Care Voter.”]

I still remember my first event with Little Lobbyists, a family-led group advocating for kids with complex medical needs and disabilities. My son Rob wasn’t with me that day--he was enjoying one of his last precious days of public school, which he loved. I’d gone to Capitol Hill on his behalf to check out Little Lobbyists’ advocacy efforts. Rob was transitioning to adult services, and he’d decided he wanted to be a disability and health care advocate (as well as a poet and an artist). Would Little Lobbyists be a good fit for him? 

After visiting Hill offices, I went to a reception for the Disability Integration Act, which had just been introduced in Congress. Walking into the wood-paneled conference room beneath the Capitol, I saw a room full of passionate and excited disabled people, and I thought, “Wow! Here are our people.” 

And that’s my first point: Disability is shared community, history, and culture. Rob experiences the thrill of belonging every time he meets another wheelchair user, a person who communicates by augmentative technology, a person who identifies as Autistic, Deaf, Neurodiverse, and/or chronically ill. Rob is nonspeaking, and I see his joy in his body language: his face lights up, his shoulders straighten, and he sometimes kicks his legs with glee. 

Under the Individuals with Disabilities Education Act (IDEA), Rob had access to the public school system and benefited from an inclusive education; however, as he reached high school, he was less and less included in the regular classroom because alternative “special” education classrooms could still be used by administrators to fulfill the IDEA’s “least restrictive environment” clause. 

This narrowing of possibility in public education as disabled youth reach adulthood speaks volumes about how our society expects “special needs” persons to participate in the real world--society has no expectations that they will live inclusive and self-directed lives. Disability rights is all about changing that.

My second point: When we say people have “special needs” instead of disabilities, we’re emphasizing “needs” instead of “rights.” In fact, disabled people have rights granted to them by law, including the Americans with Disabilities Act (ADA). Using “special needs” gives others the wrong impression about our children. “Special” needs don’t have to be equal, while “rights” carries that expectation. “Special” needs aren’t the same as everyone else’s needs--they’re different, segregated, and subject to being met after the needs of the majority are satisfied. 

Taking a page from Elena Hung about her own daughter Xiomara, Rob’s needs aren’t “special.” His needs are the same as everyone else’s: to breathe, to eat, to socialize, to get around, to be educated, and to choose his own path in life. His life has value and, just like everyone else, disabled or nondisabled, Rob requires varying levels of support, accommodation, and medical intervention to be an equal member of his community. 

Looking back on the 24 years of Rob’s life, I can’t remember not using the word “disabled” to describe him. That’s who he is. Being disabled isn’t “less than” or “incapable.” It isn’t shameful. It’s just another way of being in the world and living your life and expressing your truth.

Rob at a recent state park outing. [A young man with light skin sits in his wheelchair in front of a colorful wall mural with a Maryland State Map, beneath which is written “Nothing is real until it is experienced.” There are also painted images of a turtle, a crab, and a squirrel visible.]

I spent two decades advocating for and with Rob for his rights to be included in his school and in his community--asking family, friends, neighbors, as well as medical and social service workers to be inclusive and prioritize accessibility for Rob. I wanted to model those expectations for Rob so that he’d learn to have them himself. We learned that it is completely possible to have inclusive vacations, activities, and social gatherings. Sometimes we had to do things differently, but we still had fun. For instance, when we visit my family in Vermont, we spend time at museums and accessible tourist attractions, rather than hiking or skiing. 

If you’re still using the term “special needs” to describe your child, let me ask you: Are you holding onto fears and stigma society instills in many of us about people with disabilities? Are you worried that if your child identifies as disabled, they will be excluded? If so, look at Rob. He’s living his best life--he’s loved, supported, and included. And he’s disabled and proud of it. 

Rob uses an augmentative communication device, and one of the things he most likes to say is “I’m fighting for my rights.” People with special needs are those we shelter, protect, and frequently exclude when their needs are deemed too “special” to meet. Disabled people have civil rights protected by the ADA and multiple U.S. Supreme Court cases, including the 1999 Olmstead Decision. Disabled children need to grow up to be disabled adults and advocate for themselves. Be like Rob. Tell your family and friends you’re the parent of a proud, disabled child.

(And, yes! Little Lobbyists has been a great fit for Rob, and could be, too, for you and your family!)

---

Jeneva Burroughs Stone is the Blog Manager for Little Lobbyists. She is also a writer.

Sandra Stein (r) with her husband Matt (l) and their son Ravi (center) [image description: A white man and white woman pose on either side of a young Black man seated in a wheelchair. All three wear t-shirts with the words, “Caregiving Is Infrastructure.”]

“We shouldn’t live on this street anymore” I muttered to my son while pushing his wheelchair uphill toward an outdoor school gathering. I could feel my heart rate climb as we neared the top of the hill and sweat pooled inside my mask. My mind was occupied with many thoughts: the changes in state policy disallowing inter-state telehealth visits, the multiple medical facilities saying they would not provide care due to policy or insurance or prohibitive cost, his upcoming transition to middle school, and the choreography I was to teach his friends at the park where we were heading. 

Through his assistive communication device, my son had told me he wanted to do a dance performance for his upcoming graduation ceremony. This would involve all of his classmates dancing to the song Best Summer Ever, from the radically inclusive movie of the same name. We arrived at the park, my heart still pounding. I ignored it. I talked with his teachers. I took pictures of him reuniting with friends after fifteen months of strict quarantine. I fed him lunch. I taught his class the dance moves he had approved using hand signals. I didn’t say anything to anyone about my heart rate. I just kept going. 

Stopping what I was doing and asking for help did not even occur to me. As a family caregiver, I am my son’s transportation and food delivery system, his advocate and his interpreter. I am lauded for my perceived sacrifice and determination. I am hailed for heroism, tenacity and grit. Throughout the pandemic, my husband and I have been supplying these essential Home and Community-Based Services (HCBS) for our son on our own.

It was only when one of his friends asked if he could push my son in his wheelchair that I realized how bad I was feeling. 

“No honey, I’m using the wheelchair to balance myself.” 

I am accustomed to ignoring my own health needs as part of the heroic trope often projected onto--and internalized by--family caregivers. I push on. I power through. 

But all unattended infrastructure, like buildings and bridges, can collapse, and I suddenly felt like I might do just that. Returning to our apartment I told my husband my heart was racing and he connected me to our son’s pulse oximeter machine. One eighty. My heart had been racing at this speed for over an hour. But now I felt scared. My father and grandfather both died young of  heart attacks. My hands and feet and face went numb. I laid down so I wouldn’t fall. My husband called 911. EMS hooked me up to EKG, diagnosed my supraventricular tachycardia and gave me IV medication to stop and reset my heart before taking me to the ER.  I was discharged nine hours later with a referral for cardiology follow-up. 

I was shaken. How did I let this go on for so long? What would have happened to my son if I had blacked out on the hill? 

At my follow-up appointment the cardiologist explained this event saying, “Most people come to a stop sign, slow down and stop. Your heart instead drove in really fast circles around it.” I laughed at the aptness of this metaphor for my life and cried when he diagnosed me with caregiver fatigue. 

Yes. I am exhausted. I am bone-tired from battling insurance denials and inaccessible architecture and ableist attitudes (while continually unlearning my own), and constantly being told “No” when trying to meet my son's medical and educational needs. I am depleted after over a year without paid HCBS caregivers we could not safely have in our apartment until my son was vaccinated. I am worn down by the byzantine administrative hurdles and limited funds available to pay for caregiver services now that  we can reinstate them. I am tired of running in circles around stop signs.

The Biden Administration’s plan to invest in human infrastructure--in Medicaid and HCBS--a bill called The Better Care Better Jobs Act: A Historic Investment in the Care Economy, is, in fact, historic. Our country’s failure to invest in caregiving as infrastructure has caused significant loss and unnecessary suffering to disabled people and their families. 

I am no longer willing, or apparently able, to allow the heroism trope to govern my behavior. I refuse to deny my own limitations or allow them to impede my son’s health and wellbeing. I don’t want to hear well-meaning people say,, “I don’t know how you do it,” or “God doesn’t give you anything you can’t handle,” or “He is so lucky to have you.” I want us to collectively dismantle the unjust structures that limit access to disability services and support. 

Twenty percent of Americans have at least one disability. The pandemic has shown that any one of us could suddenly and unexpectedly become disabled or a long-term caregiver, or both. It’s time we organize ourselves for this reality. We must invest, now, in Home and Community-Based Services. 

---

Sandra Joy Stein is a writer and educator. 

Angela Carpenter Gildner [image description: a white-appearing woman with blond hair poses in a gray “Health Care Voter” t-shirt with a red cushion in the background]

On Thursday, June 17, 2021, the U.S. Supreme Court upheld the Affordable Care Act (ACA), and I breathed a huge sigh of relief. I've lost count of how many times I have metaphorically held my breath while waiting to find out if the ACA, which ensures my children and I have health insurance, will remain law.  

The Supreme Court's decision to uphold the ACA means my family of four will continue to be insured. It protects three of us from being denied coverage due to pre-existing conditions. It means I can finish my Master’s in Social Work. If the Supreme Court had not upheld the ACA, I would have had to weigh the possibility of either becoming uninsured while I finished my last classes and field work, or dropping out to find a full-time job with benefits. 

Getting my social work degree is the long-delayed answer to a professional calling to a helping profession. A calling I ignored for over a decade because good health benefits, so critical for my family, kept me tied to my old job.

In 2004, a few months before our wedding, my husband, who is a musician, voiceover artist, and audio engineer, had the opportunity to fulfill a professional dream by purchasing a small recording studio. With that purchase he left the security of a full-time position at a disability advocacy organization. I agreed my job would, for the foreseeable future, provide our family's health insurance. 

Graham and Margot [image description: a white-appearing brother and sister, each wearing t-shirt and shorts pose knee-deep in a lake with mountains in the distance on a sunny day]

That family expanded from two to four when we welcomed children—a boy, Graham, in 2006 and a girl, Margot, in 2009. During the first five years of Graham’s life, our employer-provided insurance changed carriers four times. Twice to plans not accepted by our pediatrician. Long live the myth employer-provided health care plans mean your preferred doctors will be covered year after year. 

As a mother, I wrestled with the desire to have more time with my children and the need to work full-time to maintain access to health insurance. This emotional tug-of-war worsened as it became apparent my son was not neurotypical, and my daughter, at three months old, started needing nebulizer breathing treatments several times a day. 

By the time Graham finished elementary school, he had a list of pre-existing conditions. I was grateful for the protections of the ACA—he couldn’t be dropped from our plan or max out his lifetime coverage. Thankfully, as she grew Margot's asthma improved. By the time she started elementary school she needed daily treatment only following a respiratory illness. Unfortunately, my asthma worsened significantly, necessitating two different steroid inhalers twice daily to keep it in check. 

In 2015, I added cancer to our family list of pre-existing conditions. Thankfully, my breast cancer was caught early and treated with a lumpectomy and radiation. I continue to be screened every six months, alternating between a 3D mammogram and an MRI, to ensure if the cancer reoccurs it will be caught early. 

Cancer made me hyper-aware that life is too short to waste time at a job that was no longer fulfilling. Early in 2017, I took a leap of faith and left my job of 16 years. After a couple months on COBRA, our family signed up for insurance via the DC Health Exchange, which wouldn't exist without the ACA.

By January 2018, Graham had been diagnosed as Autistic, with comorbid depression and anxiety. We had spent months, now years, working with a psychologist and a psychiatrist to find the right balance of weekly therapy and medications to ensure the playful, happy Graham who loves hugs stays present, and the angry, anxiety specter is kept at bay.

 My son will tell you, if we hadn't gotten him help when we did, he might not be here today.

In the fall of 2018, I officially entered graduate school part-time pursuing a Master's Degree in Social Work. My experiences trying to find treatment for my son, and doing citizen advocacy with Little Lobbyists to protect the ACA highly influenced this choice.

Unfortunately, as Graham's mental health stabilized, Margot's deteriorated. Margot now also has a list of pre-existing conditions including anxiety, depression, and ADHD.

Getting my children the care they need is made exponentially more difficult and more expensive by the continued disparity between reimbursement rates for behavioral health care compared to physical health care. The shortage of mental health providers who see children and adolescents means finding one taking new patients is difficult and usually involves months on a waiting list before an appointment. Finding a provider who takes insurance is nearly impossible. 

Our family's annual therapy tab reminds me the ACA still desperately needs improvement. Despite this, I am grateful for the ACA every day. Grateful for the security it provides to my family. In spite of our list of pre-existing conditions, we cannot be denied health insurance.

---

Angela Carpenter Gildner lives in Washington, D.C. with her husband, children, and an assortment of pets. After graduating with her MSW in May 2022, she plans to practice clinical social work with children and adolescents, and continue her advocacy for the health of our planet and the right of healthcare for all.

Members of Little Lobbyists pose with Senator Chuck Schumer on the Capitol Building grounds. [image description: A large group of adults and children, many using alternative mobility, pose in front of bright green summer tree foliage.]

With vaccines on the horizon for teens and younger children this summer and fall, the end of the pandemic may be close enough to grasp. How will you seize the moment as an advocate? These last weeks, I’ve been reflecting on my own plunge into state and federal advocacy, which began in late 2018, the result of my son Rob’s transition from high school to adult life. Rob wanted to be a writer, an artist, and an advocate. He’d participated in a rally against the white supremacist violence in Charlottesville, Virginia, and, apparently, that inspired him to want to do more.

His transition team thought those were fine goals, but none of the adult service providers in our area had programs that did all of those things, nor could they accept Rob due to his complex medical needs. So it was up to me to support Rob’s choices. I was a writer; I knew artists--ok, two down. But advocacy? Certainly, I’d advocated for Rob’s needs for almost 20 years, but I’d never taken that advocacy beyond the personal. But the personal is the political, right?

Rob Stone at a Bethesda protest against the violence in Charlottesville, Virginia. [image description: A young white man wearing sunglasses is seated in a wheelchair. He holds a multicolored, hand-painted sign, “HONK! 4 LOVE".]

So I reached out to Little Lobbyists, among other groups, trying to find a place that would help make Rob’s voice (and mine) heard. It was Little Lobbyists parents who taught us how to tell our stories--storytelling is the beating heart of activism, a means of bringing passion to the sometimes cold rationales of the policy table. I discovered that Rob’s voice, my voice, and YOUR voices matter.

In my feature for this blog, Share the Journey with Jeneva, I ask people to define advocacy in a single sentence. I ask because I want to get to the heart of what advocacy is and can be, beyond any one particular issue. I want all of you to understand that anyone can be an advocate--you show up, you tell your story. 

How would I define advocacy in a single sentence? Advocacy is a willingness to go outside your comfort zone, stand up or roll up, and be heard.

What does it mean to you? Here’s how the people I’ve interviewed have defined advocacy:

Laura Robeson: Advocacy is using your story and experience to impact change.

Liz Randolph: Advocacy opens the door to a better world in which we all listen to and learn from each other. 

Ken Capone: Advocacy is the empowerment of people to obtain the knowledge to achieve their goals and dreams in life.

Jamie Davis Smith: Advocacy is a way of ensuring your rights and needs are not overlooked, and a way of "bending the arc towards justice," as Martin Luther King, Jr., said. 

Alice Wong: Advocacy is telling your truth and caring for others. 

Meeka Caldwell: Showing up with your presence, voice, and knowledge for the ones that need it the most. 

Amy Silverman: Living your truth out loud for all to see. 

Sophie Stern: Advocacy means when you stick up for someone. 

Lauren Shillinger: Sharing your story can turn adversity into advocacy, and creating change can make a big impact in your community!

Nathan Spoon: Art matters as a form of advocacy because it shares the cultural life of disabled people. 

Ande Kolp: Speaking for yourself (or assisting someone to tell their story)--it is helping people to see what you see, what you believe is needed in the community, and collaborating to accomplish something that will benefit us all--like inclusion, human rights, and in the case of the HAA, community for ALL.

Maya Brown-Zimmerman: Advocacy is using your lived experiences to affect change, whether it’s change on a small level (for your life, or your child’s life), or for a broader community.

So let’s get back out there, as vaccines and our schedules permit, and tell our truths about health care, Medicaid, Home and Community-Based Services, disability rights, and much more!

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Jeneva Stone is the blog manager for Little Lobbyists. Share your story with us on our blog: email Jeneva!