Who Is Ady Barkan?

In 2019, Ady Barkan was profiled in the New York Times and Politico Magazine, and in 2020 he was on Time’s 100 Most Influential People List. Each profile described him as one of the most powerful advocates in the country. Born and raised in California, Ady went on to attend Columbia University and Yale Law School. Following law school, he clerked for a federal judge in New York City. Always driven by a commitment to social justice, he was inspired by the Occupy Wall Street movement to work to create more equitable conditions for everyday people and dedicate his life to working for change on behalf of people who are not traditionally heard.

Following his clerkship, he went on to work for the Center for Popular Democracy, an organization based in Brooklyn that bolsters collective capacity through organizing on behalf of workers and immigrants and toward racial and economic justice. While there, he was managing campaigns throughout the city and across the country, and his reputation as a successful organizer began spreading within activist communities. Ady married Rachael King, who he had met at Columbia. Rachael is a tenured associate professor at the University of California, Santa Barbara. They have two young children, Carl and Willow.

Amyotrophic Lateral Sclerosis (ALS)

The National Institute of Neurological Disorders and Stroke defines amyotrophic lateral sclerosis (ALS) as “a rare neurological disease that primarily affects the nerve cells (neurons) responsible for controlling voluntary muscle movement (those muscles we choose to move).” Voluntary muscles are those that make everyday movements like talking, walking, and chewing possible. ALS is a progressive disease, which means the symptoms worsen over time. Currently, there is no cure or effective treatment to reverse or stop the progression of the disease.

ALS is caused by gradual deterioration of motor neurons, which extend from the brain to the spinal cord and, through muscles, throughout the body. As the disease progresses, muscle weakness and atrophy. The impact of ALS and its rate of progression vary from person to person; however, those who live with ALS will all eventually lose their motor skills. Importantly, as the National Institute of Neurological Disorders and Strokes notes and as we see in the film, “ALS does not impair a person’s intellectual reasoning, vision, hearing, or sense of taste, smell, and touch.”

According to Johns Hopkins Medicine, ALS affects as many as 30,000 people in the United States, with 5,000 new cases diagnosed each year, and is responsible for approximately five out of every 100,000 deaths in people aged 20 or older. While most develop ALS between the ages of 40 and 70, it is most common among people over the age of 60. Growing research and improvement in medical management of the disease make it possible for people with ALS to continue living productive lives. Johns Hopkins Medicine states, “Fifty percent of affected patients live at least three or more years after diagnosis; 20 percent live five years or more; and up to 10 percent will survive more than ten years.”

Many people refer to ALS as “Lou Gehrig’s Disease.” Lou Gehrig was one of the most successful players in major league baseball until, at the age of 36, he was forced to retire after he developed a neurological disorder that was later identified as ALS. He is well known for his final speech at Yankee Stadium where, upon saying, “Today, I consider myself the luckiest man on the face of this Earth,” he received a standing ovation. Gehrig died two years after receiving his diagnosis.

Ady’s Diagnosis and Commitment to Medicare for All

Ady Barkan began experiencing some weakness in one arm soon after the birth of his son, Carl. After a number of tests and consultations, at age 32, he was diagnosed with ALS. Though he and Rachael had health insurance through Rachael’s employer, like so many other Americans, they faced a lack of coverage. After learning that their insurance company would not pay for a breathing machine that Ady’s physician had ordered and that Ady needed to live, Ady—with Rachael’s involvement and support—made the decision to direct his organizing skills toward fighting for healthcare reform so that he, and millions of other Americans, could receive the support they deserved.

As we see in the film, Ady and his team organized to demand action in support of Medicare for all. Medicare for all, commonly referred to as universal healthcare, refers to a healthcare system where every individual has health coverage. In Canada, for example, the government-run universal healthcare system means that there are no uninsured Canadian citizens. (However, as we continue working to understand the dynamic intersections of justice-oriented movements, it is important to remember that undocumented citizens do not receive the benefits of universal health care.) Single-payer healthcare is one such approach, where the government uses tax systems to cover the cost of healthcare claims. In the United States, Medicare is a single-payer program. Under Medicare, the U.S. government (as a single payer) provides health care for people over the age of 65. Another example of a single-payer system in the United States is the Veterans Administration (VA), but the VA enhances social support for healthcare in that the U.S. government additionally employs medical staff and operates hospitals for U.S. veterans. Effectively, proponents of universal healthcare—like Ady—believe that all people should have access to consistent and trusted health services as a public service provided by the government.

Health care in the United States is a political issue due to the private health insurance model and, as we see in Not Going Quietly,candidates for office often resist transparency with regard to their stances on universal healthcare models. Fighting for transparency, Ady challenged Democratic presidential candidates to go on record stating their positions on Medicare for all and healthcare reform. He traveled to congressional districts across the country and organized rallies of constituents who targeted members of the House of Representatives who were not supporting healthcare reform. Ady has not stopped and will never stop advocating for himself and other Americans. Though he is now supported by a respirator to aid his breathing and a technology called Eyegaze, which has laser beams that track his eyes following lines on a screen and converts that into machine recordings that then use his voice to communicate with others, he continues to engage in the collective struggle for healthcare reform.

People, Politics, and the Be a Hero Campaign

In 2010, the Obama administration passed the Patient Protection and Affordable Care Act (ACA), which made it possible for millions of previously uninsured Americans to attain health insurance. During the Trump administration, plans to repeal and replace the ACA were a major talking point for politicians who opposed the legislation, and though repealing and replacing never materialized, tax cuts for the nation’s wealthiest people and corporations passed in 2016 negatively impacted the lives of Americans who depend on Social Security, Medicare, and Medicaid. These tax cuts increased the national debt by 2.3 trillion dollars and were accompanied by budget reductions that cut benefits to the nation’s most vulnerable populations—the elderly, people with disabilities, and children. Individual mandate penalties were also put into place and resulted in more than 10 million people losing affordable qualified health coverage; millions of family members who are caregivers were significantly impacted. These political decisions, made by those who hold power, impact everyday people in life-changing ways across the country.

The Be a Hero campaign began after a video of Ady confronting Senator Jeff Flake of Arizona went viral and mobilized activists in congressional districts across the country to fight for healthcare justice. Rachael and Ady agreed that organizing events across the country through the Be a Hero campaign was necessary, even though it meant sacrificing family time. Along with Liz Jaff, Nate Smith, Tracey Corder, and others, Ady embarked on a cross-country road trip rallying advocates and pressuring members of Congress to challenge the Trump tax cuts for the richest Americans.

It was during this period that Ady returned to Washington to oppose the nomination of  Brett Kavanaugh to the Supreme Court following the sexual misconduct accusations brought against the nominee by Christine Blasey Ford.  Joining advocates, including Ana Maria Archila, Ady again returned to the U.S. Capitol. They found themselves outside the offices of Senator Flake.  Ady took a step back and created the space for Ana Maria to share her own experiences with sexual abuse and to directly confront Senator Flake as he tried to rush into an elevator to cast his vote on the nomination.

Ady’s efforts made a profound difference and have been credited in part for returning the House of Representatives to Democratic control. Using this increasing recognition, Ady was able to engage  every candidate in the 2020 Democratic presidential campaign,  challenging them to articulate what they would do regarding health care if they received the nomination.  This act of courage elevated the issue of health care as a right for all Americans and the importance of Medicare for all.

In April 2019, Ady testified before the House Committee on Rules in favor of Medicare for all at the first-ever congressional hearing on the subject. On the second day of the 2020 Democratic National Convention, Ady spoke about the importance of health care for all and his support of the Biden/Harris ticket. The Be a Hero campaign and PAC remain powerful forces today in the fight for Medicare for all and social justice. A focus today is to include funding for homecare services in President Biden’s Build Back Better bill. This film offers a glimpse of Ady Barkan’s life, the strength, love, and commitment of his wife, Rachael King, and the true impact of the U.S. healthcare system on millions of people.

Bird-dogging and the Importance of Organizing for Collective Action

Bird-dogging is a grassroots political strategy implemented by activists and citizens to get elected officials and candidates to speak on the record—and off the cuff—about consequential issues. As an intervention, bird-dogging puts politicians in the hot seat and doesn’t let up. As seen in the film, training and strategic planning ahead of time ensure that this strategy will be successful. It requires, at minimum, two people who have decided on a question of importance beforehand and then strategize when and how the question will be asked in such a way that conditions are created so that the politician has no other choice but to respond.

One possibility is an informal, unscripted scenario where one person shakes the representative’s hand while a teammate is recording the exchange. The point at which participants are face-to-face, or hand-in-hand, with the representative is when the question is asked audibly and clearly. Bird-dogging requires anticipating the representative’s attempt to sidestep responding, so activists are trained to continue pushing with the question in order to intervene in an official’s attempt at deflecting or avoiding direct response. As these encounters are recorded, the exchanges are often published on social media, leveraging the unique ways social media can and has changed the landscape of grassroots activism.

Ultimately, bird-dogging is an insistence that people have power and an opportunity for people to take their power back in collective spaces and to demand accountability from representatives and officials. You can learn more about bird-dogging and ways to engage here.