The Forever Legacy of Activist Ady Barkan

I’m always extremely touched by the stories of community organizers. I pride myself to be one. From the streets of the Arab Spring to using my time, intellect, labour to create conversations about equity in the digital space and the need for different perspectives to take place together on the fairness or openness of the digital “commons” to be present and have a voice. Organizers like Ady sacrifice their comfort, privacy and labour to create new spaces for the public to be engaged in democracy, reclaim their voices, and their rights, take space and be the change they want to see.

Ady ignited my interest in public health policy in 2017 during the depressing months of a Republican trifecta which tried in vain to repeal the Affordable Care Act (Obama Care). It very much influenced my choice of my master’s degree, my choice of apprenticeships in 2017 and 2018 in Scotland where I chose to work in the business departments in two hospitals in Glasgow. I eventually wrote my master’s thesis about the efficacy of supply chains during public health emergencies and interventions and then very few months later, I organized a Global Summit on Science Misinformation.

Barkan’s life changed overnight when he noticed weakness in his hand and received the devastating news that he had ALS, a neurodegenerative disease with no cure. Given just 3-4 years left, Barkan refused to let his remaining time go to waste. He became even more devoted to activism, using his personal struggle to highlight the need for healthcare reform.

Though his physical condition declined, Barkan’s star rose in progressive politics. He gained national attention for confronting politicians like Senator Jeff Flake over healthcare votes. His protests, including getting arrested in his wheelchair at the Capitol over Brett Kavanaugh’s nomination, drew headlines. Politico called Barkan “the most powerful activist in America.”

Barkan co-founded the Be A Hero political organization to push for policies like protecting health coverage for pre-existing conditions. He lobbied Congress and spoke at the DNC about the moral imperative for universal healthcare. Barkan endorsed candidates like Elizabeth Warren and Bernie Sanders who shared his values.

When Barkan later supported Biden’s 2020 run, he made clear they disagreed on some issues. In a video call, Barkan pushed Biden to increase healthcare funding, exemplifying his refusal to compromise his principles. Even losing his speech, Barkan persisted through assistive technology. His sincerity and good humour disarmed opponents.

In his memoir Eyes to the Wind, Barkan reflected on keeping his activism alive despite declining health. He wrote about appreciating simple joys like time with his young son and wife. Though robbed of physical abilities, Barkan found purpose in fighting for equity.

Up until his final days, Barkan continued travelling and speaking at events. His lust for life motivated others to persist against long odds. He called on able-bodied people to be allies and lift up marginalized voices. Barkan’s example helped spur mass actions for disability rights and healthcare reform.

Like few could, Barkan put a human face to complex policy issues. He movingly described the real-world impacts of unaffordable coverage and healthcare rationing. Barkan not only argued bold reform was possible but a moral duty. His unwavering call for justice unified diverse coalitions.

The progressive movement lost a giant much too soon. But the torch Barkan lit will continue inspiring people to act. His legacy will be measured in the real changes he helped usher in and the lives touched by his words and spirit. Through it all, Barkan never lost his optimism, humour or belief in a more just world. His courage in the face of mortality can steady us all.

Ady Barkan showed one individual can spark transformative change. By continuing his fight, we honor his memory. May it strengthen our commitment to the causes Barkan held dear until victory is won.

Getting involved in local issues provides citizens with opportunities to gain civic experience and directly influence policies in their communities. By attending town halls, volunteering for campaigns, joining neighbourhood groups and more, people can practice political participation, build knowledge, and see the tangible impacts of their efforts.

Starting at the grassroots level allows activists to hone skills in organizing, research, and mobilizing that they can eventually apply to broader causes. Change often bubbles up from active citizenry in cities, counties, and states, providing models for national action. When neighbours unite around local priorities, it fosters a sense of empowerment, social capital, and collective identity critical to a healthy democracy. Local politics serves as the training ground for future candidates and their staff, building a progressive pipeline with ties to communities. In these ways, strong local civic participation from the ground up establishes the foundation for an effective national democracy.

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