Further Thoughts On “White Privilege”

For the last three years, I’ve been hunkered down at home. My immune system was on the fritz, and we only recently discovered why. Now that the pandemic has mostly burned itself out and my immune system has re-calibrated, I’ve been visiting the library again. At my last visit, I noticed an intriguing book on the new releases display: The Invisible Kingdom: Reimaging Chronic Illness by Meghan O’Rouke.

The Privileged Journey

A few chapters in, I find myself continually on the verge of tears. Is it too soon to be going back and picking at the sutures? Perhaps, but I can’t help it. The recognition of my own experience in hers is too powerful to put down.

Struck by her story and inspired by her courage, I pursued some reviews to see how others had benefited from her gift. And I immediately regretted it.

The first review I saw read, “The title of this book should be ‘The Privileged Journey through Chronic Illness.’” And it just got worse: “This is not a book about disability justice; it’s a story of how hard one upper-class White woman had to work to feel well, with an occasional ‘and imagine how hard it must be for poor/POC/trans people’ caveat.'”

A few years ago, I wrote about how white poverty is now a privilege. I get the same vibe from these reviewers. While they acknowledge that the author collected and wove in the experiences of various people from all different backgrounds, that wasn’t enough. As a New York Times bestselling author, she should have given up her platform and stamp of approval to someone without the same writing experience. Is that not absurd?

My heart hurts for the author. I understand the health challenges she went through and I can only fathom the courage it took to share her story.

I could have written this book. It could me under attack, simply for trying to help others… while being white.

A Hateful Slur

A few years ago, amidst a conversation about frugality, sewing, anime, and wedding-planning, a black coworker, J, told me that she considered “white privilege” to be a hateful slur. Her now-husband is white and was called all kinds of names for “tarnishing black culture.” I’ve thought about that ongoing conversation a fair amount, and I generally agree with J. The phrase incorrectly assumes the conditions of my life are the result of my skin color rather the choices and hard work that actually forged my life.

“White privilege” is a racial prejudice: a false belief that race is determinative of behavior and experience. It’s offensive to working-class white people who never had much advantage, especially when the condemnation comes from some millionaire celebrity, politician, or Ivy League professor.

“Privileged outcomes for whites,” conversely, is a statistical assessment; we can observe it in data and acknowledge that its distribution is unequal. That, I would be open to discussing. That, I believe, does exist.

What’s frustrating to me is the phrase is not rooted in a real effort to improve race relations. And it’s useless unless it’s coming from a person who also believes there is also black privilege, female privilege, male privilege, etc. Everyone has privilege in different circumstances. We don’t see complaints that there aren’t enough white folks paying football or basketball, right?

The Invisible Kingdom

The invisible kingdom is not just the land of mysterious illness, but that land of false benefit. I am a queen out working the fields. All the while, tomatoes are being hurled at my back as I’m called a terrible ruler. In reality, I’m no different than hecklers. I’m struggling to simply make it through the day. But my humanity is invisible.

Throughout most of my illness, our annual household income was under $50,000. It took me almost five years to receive my first diagnosis. In the time between symptom onset and diagnosis, I was told my illness was all in my head, borne of some mental instability, and of my own fault. Most friends quickly abandoned me. I was functionally disabled, but ineligible for disability benefits. We had to sell everything of value to pay for medical treatment. We haven’t taken vacations, we don’t eat out, and we don’t spend money on anything other than bare necessities.

What privilege did my whiteness offer me?

What privilege did being heterosexual offer me?

What privilege did being a women offer me?

I can’t think of any special advantage I reaped. Illness is illness, no matter whom it afflicts. I don’t understand why suffering needs to become some sick completion.

I don’t know why the color of the author’s skin should diminish her experience of struggling. I feel deeply hurt on her behalf. The woman is being villainized for trying to give voice to the silenced. She’s actively working to help the disadvantaged share the universal experience of unexplained illness. And she is been shunned and shamed for it.

The Origin Story

My Scottish ancestors were affluent land owners and my Irish ancestors were slaves. My English ancestors fled tyranny in England and my Slovenian ancestors fled violent wartime occupation. From the 13th through 18th centuries, a small subset of my heritage lived a good life. Generally speaking, my ancestors suffered similar brutalities to any other family. Their history is my origin story. But it’s just that: a story. It’s a tale told at bedtime about love, fortitude, bravery, and heritage.

But my own story begins at my birth. I had great parents who gave me their time, attention, and love. I had a roof over my head, food on the table, and a safe place to return. But we struggled desperately through the economic downturns and there were period where both my parents could not find work. The whiteness of my skin did not protect me from life’s struggles.

Knowing where we come from give us pause to reflect back on the values of our ancestors. My people came from a culture of family, work ethic, and courage. When faced with hard times, I think about that culture–the belief that steadfastness will get me through it. My skin color does not offer privileged; knowing what my ancestors faced and overcame, perhaps, does.

My Pale Skin Offered Me No Favors

I can tell countless tales of the abuses I endured at doctors appointments, in emergency rooms, and during torturous medical tests.

My pale skin offered me no favors.

Why am I so bothered by these reviews? They are not directed at me, and have no impact on me. Why are they breaking my heart so?

Similar to the author, I’m one of the rare few who somehow overcame. It’s my desire to share what I’ve learned through my illness, and to help people. It took me years to find someone who would listen, then years more to be diagnosed, and then additional time to be effectively treated. No one should have to go through what I endured.

While I have no intention of writing a book, the cruel treatment of people trying to help their fellow humans overcome hardship is just devastating to me. Even if I wanted to, I could never subject my story to that kind of criticism. It makes me hesitant to share my own experience, knowing that my good intentions may be misunderstood and misconstrued. It makes me sad to think that because I have some free time, internet access, access to organic produce, and the compulsion to help others, I could be labeled a racist, ableist, etc.

And because I’m not sure my point, nor how to wrap this up, I’ll leave you with this thought:

“No matter how old I get I will never understand two things:

1. Why we all just can’t get along

AND

2. Why we can’t be kind to one another”

Christina Casino