Ursula: To those dark souls on the Internet
If you have been following us at On The Culture for several weeks, you know that Marybeth and I were both moved to write about a wee red-haired firecracker in Nashville named Pearl Joy Brown. Pearl was born a couple of months ago with some severe health problems, and the story of her determined journey to experience life is one not to be missed.
Pearl still struggles daily and has been given about a year to live. Her health care is expensive, and the family receives help from a state agency to pay bills. The family has also been inundated with an outpouring of generosity – both financial and spiritual – from its local and cyber communities. The Browns have felt enveloped in love even as they feel terror that Pearl will be taken from them at any moment.
My family feels very close to the Browns and Pearl even though we have never met or even spoken on the phone. I have a 6-year-old daughter with Down syndrome. Like the Browns, we were urged to abort our daughter when we learned of her condition in utero. Unlike the Browns, though, we know our daughter likely has many healthy, happy years ahead of her. I am inspired by their faith and ability to live one day at a time.
When I check Eric Brown’s Twitter feed, my eldest daughter (happy for a distraction from her schoolwork) races over to ask, “Is Pearl okay? Can I see her picture again?” I rejoice in showing her the pictures; Pearl, to me, personifies a beauty of God’s — not man’s — creation.
Many times Pearl’s story has made me cry with either fear for her health during a crisis, or joy at her numerous, miraculous rebounds. At the end of the day, I often give my husband, Matthew, an update.
A few days ago, we were both initially thrilled to see that major media markets were sharing Pearl’s inspirational story. How many people would, like us, be moved and inspired by her story!?
But then we read the online comments by readers.
We were horrified. Sad. Sickened.
But we should have known better, as my husband wrote in a new post for our personal blog:
My wife and I frequently write about raising our daughter Magdalena, who has Down syndrome. Believe it or not, we get a lot of blowback. Something about the online intersection of disability, healthcare, and anonymity brings out the worst in the people. I know I am not the first to point this out.
… The miracle of Pearl’s birth and life [has now] attracted the attention of the media. As her story reached an ever broader audience, the inevitable happened: It brought out the Internet lowlifes. A recent front-page story in the Nashville Tennessean was picked up by both USA Today and the U.K.’s Daily Mail. The story mentioned that Pearl’s care is being paid for by TennCare, Tennessee’s Medicaid program. Eric Brown estimates that the cost of Pearl’s care has already reached $1 million …
They should have aborted that baby.
What a selfish family, blinded by their stupid religion.
How could they justify bringing a severely disabled child into the world?
What kind of quality of life will that baby have?
She will only ever be a drain on the public purse.
That money would be better spent elsewhere.
Watching this unfold has been painful to me not just because of my prior experience writing about Magdalena and having to read ignorant and insensitive remarks about my daughter, but because, unlike me and unlike my wife, the Browns didn’t ask for this. They aren’t writers … They are just a regular family. They are just good people who listened to their hearts and said “yes” to life.
And look what they got for it. Everyone with an Internet connection is a medical ethicist now.
Though the Browns, in their own words, are not interested in politics, the sad fact is that politics is interested in them. The choice they have made to bring Pearl into the world is viewed universally in our culture as a political act. It shouldn’t be so, but it is. Now, to their chagrin, these unassuming people find powerful cultural and political forces bearing down on them. Anonymous hordes of angry Internet commenters demand to know:
Who do you think you are asking society to sanction your irrational decisions?
How dare you bring out the worst in us by forcing us to confront the living reality of
your “imperfect” child?
Well I have some questions of my own.
Do we really want to end up the kind of culture that puts a dollar value on human life? Is that how we define compassion? Do we really want to start judging the worth of our fellow citizens based on the net contribution in financial terms that they make to society? Is that what we mean when we talk about taking care of the less fortunate?
We are all, to one degree or another, broken down, busted up, imperfect, bodies. We are all of us incompletely formed. So count your blessings and leave these people alone. If you must offer your opinion, wish them well and be on your way. Keep your ugly inhumanity to yourself. You’ll feel better, I promise.
I wish the Browns peace during this period of unwanted scrutiny. I wish them comfort during this time of turmoil. We will all one day be as helpless as Pearl Joy. To be born when she was, and into the care of such giving and faithful parents, well…
…we should all be so lucky.