Friday, October 26, 2018

Young Adult with Disabilities to Healthcare Justice Activist: A Narrative and a Plea to Vote

Black and white photo of a white woman wearing glasses, looking upward and smiling, holding two Muppet-like dolls
Photo by Nate Gowdy
This essay is part of a partnership between #CripTheVote and Rooted In Rights. The opinions expressed are solely those of the author.


My Early Interest In Politics
By Leslie A. Zukor

My first memories of being interested in politics were in eighth grade, when we learned about political theory. I remember being fascinated about how democracy could morph into authoritarianism. By the time I had completed one semester of high school, I had perused political philosophy. Plato was a personal favorite, and I found myself gravitating toward conservative ideas - especially on matters like abortion and other cultural issues. During my sophomore, junior, and senior years, I volunteered on political campaigns, from the state legislature to the US Congress, and even ventured to Washington, DC for a couple of educational programs.

However, it wasn’t until I identified as a disabled person that my worldview began to crystallize. For most of high school, political issues were mere abstractions. I grew up in a wealthy suburb of Seattle, so my food, shelter, and college education were not in question. Before I was an adult with diagnosed disabilities, I had little awareness of healthcare, the economy, and our social safety net. In short, living in wealthy suburbia culminated in privilege, as well as obliviousness to the political and economic realities so many people face.

The Onset of Disability and My Political Consciousness

While I was taking summer courses in between my freshman and sophomore years of college, everything changed. Attending Wellesley, I had hoped to major in Classical Studies and Philosophy, and to do graduate work in either politics or history. From my nineteen-year-old vantage point, my life’s story would inevitably culminate in a PhD and a job somewhere in academia. However, driven by stress, biological factors, and ill-advised medication given by my neurologist, I suffered a breakdown, which culminated in mood dysregulation, panic disorder, and PTSD. During my three-and-a-half-week hospitalization, I started seeing the first signs of what would become nearly a decade and a half of disability.

Only a few weeks after my hospitalization, my family received its first bills for my medical care back in Boston. I quickly learned that I was lucky that my Dad had taken out a policy for me through Wellesley that had covered mental health, because our Washington State-based Regence insurance didn’t afford the same protections. As a result, my family and I averted a $30,000+ hospital bill. No longer was the issue of healthcare merely an abstraction; no longer were prescription drug costs something that only my elders had to face. Now, as a person whose disabilities required medication for the rest of her life, issues I once took for granted were now a matter of life vs. death, poverty vs. sustenance. As my family paid more and more for my medical bills, totalling well over $400,000 in fourteen years, I came to the realization that affordable, accessible healthcare was a preeminent disability right.

Involving Myself in Electoral and Single-Issue Politics

My healthcare justice activism was ultimately motivated by the cementing of my identity as a disabled American. In 2014, I was officially approved for Social Security Disability. Seeing how much Medicare and low income subsidies I personally qualified for under Part D benefited my life, I actively advocated for the policy for all Americans. Thus, it should come as no surprise that I spent the better part of a year volunteering for Bernie Sanders’s Presidential campaign, being a delegate to the Washington State Democratic Convention, and serving as First Vice Chair of the Washington State Democrats Disabilities Issues Caucus. In all of my activism, some of which garnered press coverage, I emphasized the importance of single-payer healthcare for people with disabling, chronic health conditions, like myself.

Although the primaries ended in a loss for my candidate, my personal journey in politics was just beginning. Inspired by the state’s caucus system and my own involvement in the electoral process, I delved full-speed ahead into the healthcare justice movement. In October of 2016, I joined Health Care For All - WA, where I now sit on the Political Action Committee. I also volunteered for a year as Steering Committee President, Events Committee Chair, and served a stint on the Board of Directors for Whole Washington, a well-intentioned, but poorly executed Washington State initiative campaign, to ensure healthcare for every man, woman, and child - regardless of ability or disability.

Setting my Sights on Single Payer

The pinnacle of my political involvement came in January of 2018, when I testified before our state legislature’s health committee on Senate Bill 5701, which would have established a single-payer system in Washington State. Although I had only a minute to speak, I emphasized the bill’s positive impact on disabled people struggling to find insurance, and also recounted my personal story - one that included a private insurer’s chiding my family and me on a recorded line to go to the hospital, in lieu of covering my psychiatric medications on an outpatient basis.

Equally powerful, I elucidated the harrowing reality that the only reason I was alive was because my parents could afford to pay for the best doctors and most cutting-edge treatments when I was a young adult, without which I may well have succumbed to suicide. I was later told that the friendly overflow crowd gave me thunderous applause in the hall. This chance to offer my voice and experience as a disabled person in service of actual policy was transformative for me, and inspires my efforts to continue advocating for the crucial disability right of ensuring quality, affordable healthcare for all.

Voting and Values

With our next national election coming up quickly, I have had plenty of time to reflect on my political journey - from being raised by a liberal mom and a center-left dad, to becoming a young conservative, to ultimately arriving at progressivism in my late twenties. I realize that with different formative experiences, my beliefs and values would have been far different. Thus, even though advocating for a healthcare system abolishing private insurance companies culminates in my voting for left-leaning politicians, another person with a disability might see the same issue from a polar opposite perspective. As someone who values freedom of conscience, I would urge everyone to be true to his or her value system when voting - regardless of how the media frames the issues, regardless of how one’s family has voted in the past, and regardless of how one has cast ballots in earlier years. In short, I haven’t always voted for the same party or the same issues, and I see nothing wrong with changes in worldview as one evolves as a person and member of society.

As it stands, on November 6, 33 Senate seats, all 435 Congressional races, and a myriad of other local and national issues will be decided via the American electoral process. While I will be cheering for healthcare justice advocate Alexandria Ocasio-Cortez and voting for Berniecrat Sarah Smith in Washington’s ninth Congressional District, I urge you to take the advice of the Father of the Americans with Disabilities Act, Justin Dart, as you do your own research on which candidates and issues reflect and further your values. “Vote,” he said, “as if your life depends on it. Because it does.”

Each time we cast a ballot, we make a statement about how we believe our government and a just society should function, and about which candidates are the best to carry out these ideological commitments. It is all of our jobs as people with disabilities to ensure that government both reflects and acts upon our concerns, however diverse they may be. This election season, exercise your right to vote, urge your friends and family members to do the same, and may the candidates and initiatives best for disability issues prevail.

Leslie A. Zukor is a disability rights activist, who serves as First Vice Chair of the Washington State Democrats Disabilities Issues Caucus, and is the Secretary of the Washington State Political Items Collectors. She also is a member of Health Care For All - WA, and serves on its Political Action Committee. Holding a bachelor of arts in Anthropology from Reed College, Leslie transferred from Wellesley College and went to school in Oregon part-time for five years, before she earned her degree. Her interests include political history, photography, and collecting liberal, progressive, and Leftist political memorabilia. You may follow her on her personal Facebook page