Survivor's guilt, holocaust education, and CF advocacy
Updated: Jun 15
By: Xan Nowakowski, PhD, MPH
<<< Listen to Xan Nowakowski read their blog below>>>
PAVEL: Maybe your father needed to show that he was always right—that he could always survive—because he felt guilty about surviving.
PAVEL: And he took his guilt out on you, where it was safe…on the real survivor.
ARTIE: Um… Tell me, do you feel any guilt about surviving the camps?
PAVEL: No…just sadness. So, do you admire your father for surviving?
ARTIE: Well…sure. I know there was a lot of luck involved, but he was amazingly present-minded and resourceful…
PAVEL: Then you think it’s admirable to survive. Does that mean it’s not admirable not to survive?
ARTIE: Whoosh. I-I think I see what you mean. It’s as if life equals winning, so death equals losing.
PAVEL: Yes. Life always takes the side of life, and somehow the victims are blamed. But it wasn’t the best people who survived, nor did the best ones die. It was random!
During a month when our community experienced seemingly endless loss of friends and loved ones, Art Spiegelman’s Maus topping multiple bestseller lists felt poignant and appropriate. Banning literature about the Holocaust from public schools erases the oppression chronically ill and disabled people have endured throughout history. We need hardly look beyond the present moment to see examples of such injustice.
People with CF continue to die—whether from COVID-19 complications or denial of routine care—because of these same patterns of discrimination. Even if we exercise every possible precaution in our own daily lives, our ultimate survival depends on others doing the right thing. Prioritizing community in every action affirms our basic human rights of life and liberty. Yet every few days, people with CF in the United States and around the world mourn our peers whose lives were stolen away. The support our peers receive from clinical providers, community networks, and nonprofit organizations can only go so far against the systemic oppression of societies that consider us worthless. Over two years into this pandemic, we continue to witness flagrant disregard for the lives of chronically ill people—and how racism, ethnocentrism, and capitalism exacerbate willful disinterest in our survival. These patterns are both deeply appalling and hauntingly familiar. And with renewed dialogue about Maus flourishing worldwide after its initial banning by a Tennessee school district, questions of intersectional justice loom large in the minds of many. We are seeing, in real time and on a massive global scale, the many faces genocide can take.
I took the opportunity to reread Maus after my wife found the original two-volume edition in our favorite local bookshop. Despite becoming an avid reader of graphic novels, J had never encountered Maus previously. As I told her what Spiegelman’s stories of reckoning with the legacy of the Holocaust in his family meant to me, I immersed myself anew in the story. Rereading the books now after my first experience with them in 1998 made me reflect on what I have learned about myself since then—both about my health and about my ancestry. It also made me consider additional dimensions of survivor’s guilt, our focus topic for the newly published issue of CF Roundtable.
I first read Maus while studying at an independent high school in New Jersey. Many of our students came from Ashkenazic Jewish families, and a few from West Slavic families like my father’s. Most of us were steeped in Holocaust history long before our high school years, yet still struggled to comprehend the magnitude and scope of the Nazi genocide.
We knew some basic statistics— six million plus Jewish people murdered throughout Europe alone, over three million of whose murders occurred in Poland during Operation Reinhard. Many of us knew millions of non-Jewish ethnic minority Poles were slaughtered during the same Nazi campaign, including nearly three million Slavic people and over 200 thousand Roma people. Likewise, we had learned about the prior Aktion T4 initiative to murder over 10 thousand chronically ill and disabled people in Germany and its extension into Poland following invasion. Efforts to estimate the number of sick and disabled Polish residents who were euthanized under later phases of Aktion T4 persist today, as do attempts to quantify murders committed by Nazi officials outside Europe.
I spent my 10th grade year studying the Holocaust for a year-long research project. Back then, I was mostly “stealth” about my health and the fact that my providers thought I had CF. No one could prove what was killing me because I could not produce enough sweat for a valid diagnostic test. Efforts to analyze those tiny amounts of sweat produced concerning results. Yet I remained in a fragmented limbo with both diagnosis and care until genetic testing at age 32 confirmed what my parents knew early on. At the time, some of my family history also remained unknown even to me. I’ve learned a lot about where I came from between 1998 and last winter when I explored the relationship between ethnicity, ancestry, CF diagnosis, and health equity. In that CF Roundtable column I mentioned that my family speaks better German than Polish, musing that this was “another story for another time”. Now would be the moment to point out explicitly that in Europe as in what became the United States, assimilation proved a powerful survival tactic for people targeted by genocide. We see the same patterns today with education and CF care alike. US residents must often learn English to interact with school systems, social services, and clinical providers even if their native language—for example, Spanish or Haitian Creole or Arabic—is widely spoken in America.
My ancestry contains similar history regardless of whom people might consider my “real” father. Assimilation likely explains why I even got the chance to live. Children with light skin, hair, and eyes were often subjected to traumatic and deadly “reeducation” programs at internment camps and residential schools if we did not assimilate directly by hiding our heritage. And of course, CF was only considered as a possible cause of my early childhood health challenges because I was white. Indeed, Americans of Indigenous lineage are more likely than our peers to experience delayed CF diagnosis. For Black and Brown patients with Indigenous ancestry, these disparities are especially sharp. Even white CF patients with Indigenous ancestry are more likely to have rare CFTR mutations that make us ineligible for highly effective modulators, and to receive inadequate treatment overall. The same patterns hold true to some extent for Americans of Slavic lineage. And the “whiteness” of multiethnic people of Indigenous and Slavic lineage alike continues to evolve in national datasets like the US Census. These same datasets were used to imprison over 100 thousand Japanese Americans in camps during World War II—in which multiple nations fought against Germany and liberated Nazi concentration camps.
Maus expansively addresses such intersecting targets of oppression while centering Jewish experience. So how do those of us whose ancestors became targets of genocide honor this history in our CF advocacy? This question remains fraught with emotion and offers few easy answers. In Maus, narrator Artie struggles for coherence and clarity as he reconciles these narrative threads and moral questions. He echoes the sadness and anger his father Vladek feels decades after surviving imprisonment in the Auschwitz, Gross-Rosen, and Dachau concentration camps after previously being captured as a German prisoner of war while serving in the Polish army. He also feels frustrated and lost in responding to his father’s own anti-Black racism and manipulative behavior.
I feel the same most days when reading news out of Poland. After the Nazis murdered around 20% of the entire pre-war Polish population—including 80% of Jewish residents—the nation became shattered socially. Vicious anti-Semitism, internalized anti-Slavic bigotry, homophobia, transphobia, ableism, white supremacy, and a host of other familiar evils run rampant. Seeing what multiethnic, queer, trans, chronically ill, and disabled people whose families never left Poland experience now makes me feel almost grateful for the microaggressions I experience daily here in the United States. But it does not dull the pain and anger of watching my friends die.
Our whole community is reeling right now with the knowledge that many of our deaths were preventable. In willfully failing to prioritize health and safety during COVID-19 just as in denying diagnosis and care to racial and ethnic minority CF patients worldwide, society demonstrates constantly how little it values us. Holocaust history demonstrates how our survival depends on our peers seeing these parallels and fighting for justice. So I consider Maus essential reading for our CF community—not just patients and families ourselves, but everyone in our lives. Spiegelman’s narrative of the horrors of the past and their agonizing legacy in the present shows these patterns of interconnectedness and mutual support both elegantly and accurately.
I treasure Maus all the more because it explores the enduring challenge and frequent discomfort in considering and honoring our collective responsibility to advocate for one another. COVID-19 has forced many people who never previously had to reckon with questions of justice in survival to confront the terror of being marked for death because of illness and disability. People of ethnic and racial minority backgrounds have often confronted this truth early on even without those additional experiences of oppression. Jewish, Slavic, and Roma people in the United States carry this collective memory in our hearts regardless of individual circumstances.
Yet although our ancestry itself does not change along with our knowledge of it, our health and functioning are inherently mutable. They can change at any time—for any reason, and sometimes even at random. So if you have never known what it’s like to be sick, to be disabled, to be willfully framed as expendable…wouldn’t you want someone to speak up for you if that changed? Anti-Nazi activist Martin Niemöller warned of the inevitable if no one protested: Als sie mich holten, gab es keinen mehr, der protestieren konnte.
May the memory of all those murdered in the Holocaust be a blessing. May their stories inspire us always to speak up for one another before we lose that chance forever. And may we channel feelings of guilt from our own survival into action that helps our whole community thrive.
Dr. Alexandra “Xan” Nowakowski is 38 years old and has CF. Xan is a Director with USACFA and writes the regular “Pearls of Wisdom” column for CF Roundtable, in addition to being a medical sociologist and public health program evaluator. They currently serve as an Assistant Professor in the Geriatrics and Behavioral Sciences and Social Medicine departments at Florida State University College of Medicine. They also founded the Write Where It Hurts project (www.writewhereithurts.net) on scholarship engaging lessons from lived experience of illness and trauma with their spouse, Dr. J Sumerau.