#disability – Intentional Catholic

November 28, 2022November 27, 2022

Poison Oak, Celiac Disease, and Miraculous Healing

A year ago, my daughter was diagnosed with celiac disease. This is relatively common in people with a bonus 21st chromosome, which is the only reason we found out about it in the first place—initially she appeared asymptomatic, but it showed up in routine bloodwork that had been delayed for years.

As I began to process the new world God had, yet again, thrust us into without our consent, two reactions from people of faith made me want to pull my hair out. The first was that she should take regular Communion and not worry about cross-contamination and all that jazz, because God would never allow the Eucharist to harm his faithful. Which is the same logic behind drinking poison and snake handling, I might add, and none of us believe any of THAT is a valid expression of faith.

The other was that we should take her to a healing prayer service so she would be cured.

Now, on the one hand this was a pretty attractive idea, b/c we’re foodies and I didn’t want to sacrifice anything we love. (Selfishness alert!) At the same time, I was painfully aware that I DID NOT BELIEVE she would be healed. And I knew that without belief, there wasn’t much point in going.

Part of me excoriated myself for my lack of faith.

The other part of me is a firm believer that every suffering I have been given has burned away parts of me that are not Godly. We’re supposed to take up our cross and follow, not go around demanding God remove it.

But then, why EVER pray for healing?

And I totally do pray for healing. In fact, here’s a memorable story. In 2019, my husband and I went to Napa Valley for a long weekend to celebrate our anniversary. On Day 2, I got into poison oak. Bad. To make matters worse, we were hiking and I was sweating. Badly. Which means the sweat spread it EVERYWHERE.

When I woke up in the middle of the night, I knew that sensation. I didn’t sleep the rest of the night. In the morning I asked him to look. My entire back was a sheet of red. So were my legs. And arms.

Now, we went and did the things. The Tecnu, the Zanfel, washing all the sheets and clothes at the bed & breakfast.

But I know how poison ivy goes. This is a two-week course that gets worse before it gets better. And this was our TWENTIETH ANNIVERSARY TRIP.

So yes, I prayed. I sat on the edge of the bed, quivering and desperate, and said, “God, I know how poison ivy goes and I know what I’m about to ask is counter to all the things you put into place in the universe. But please, please, PLEASE let this go away overnight.”

Well, it wasn’t totally gone. But it WAS about 75% gone! And our trip was not ruined.

So I know, from my own experience, that God CAN perform miraculous healing.

But when the suggestion to go to a healing service for my daughter’s celiac disease came up, it felt all wrong. It hearkened back to a prayer offered when she was born, asking God to “heal” her of her Down syndrome—as if that extra chromosome were God’s mistake that he was just waiting for us to pray and he’d rectify it, instead of part of the rich tapestry of EXACTLY WHO HE INTENDED HER TO BE ALL ALONG. Because GOD DOESN’T MAKE MISTAKES.

This year, which I have spent trying to reconcile the irrenconcilable—the balance of detachment and Godly anger at injustice in the world—has taught me one thing, which is that two contradictory truths can both be true, at the same time, and in the same heart. We need detachment. AND we need Godly anger at injustice. There is an irreconcilable tension there that is part of the mystery of Christian living.

I think this business of healing is the same.

I have no pithy wise saying to end this reflection, unless it is that the tension between irreconcileable truths is part of the mystery of God, and that we have to learn how to grapple with that tension.

October 10, 2022October 10, 2022

A little less talk, a little more action

You know that saying: whenever you point a finger at someone else, four fingers are pointing back at you? (Well, it’s really three, as you can see, but…)

I think about that a lot in the context of Intentional Catholic. Anything I write, integrity forces me to turn back on myself, mirror-like.

I’ve been struggling through the Bible in a Year podcast… valuing it for the sake of hearing Scripture in a way that helps me grasp the historical context, but struggling because sometimes the commentaries really set me off. The one on Matthew 25—which is sort of the whole foundation of Intentional Catholic–pretty much gave permission for people to say “I’m clothing my naked children and feeding my hungry family. I’m covered.” In fairness, I do not believe that’s what he intended to convey, but it certainly does give tacit permission to ignore the plight of ACTUAL poverty and suffering.

Which is not to belittle feeding and clothing a family. I am up to the tips of my frizzy curls in caring for kids. It’s a real thing.

But it doesn’t negate our responsibility to the poor, marginalized, and vulnerable. First of all because keeping our kids fed and clothed is only a sliver of what keeps us so busy. The vast majority of what keeps us hopping is not essential. We could ALL cut back on some of our luxury and busy-ness and refocus some of that energy on the poor, marginalized, and vulnerable.

But as I sat there stewing and fuming over this, it occurred to me that me sitting in my house writing blogs and social media posts is not clothing the naked and feeding the hungry, either.

Here’s the thing. The conventional wisdom is that not everyone is called to everything. We are supposed to find what we, individually, are called to.

But I am an Enneagram 1, which means I’m very concerned with Getting It Right. For myself AND for the larger world. Enneagram 1s are deeply susceptible to scrupulousness. (Scrupulosity?)

The trouble is, when I, as an Enneagram 1, try to parse out what I feel most passionate about, I can’t do it. It all matters!

I have a child with a disability. Our health care system of access & payment is deeply dysfunctional and a burden on families.

My conscience stings every time I see a homeless person at an exit ramp. How dare we drive by, avoiding eye contact to preserve our own comfort? How dare people on my “Nextdoor” app call them “zombies,” as if these are not human beings with the same innate dignity as themselves?

I see the chaos and suffering that causes people in Central America to flee for the U.S.—and the way some people here villainize those who are desperate for the same security we treat as a divine right. How can I not be passionate about refugee and immigration?

I have godchildren and family members whose skin color will make them a target when they grow up. How can I not rail against those who deny systemic racism?

I had infertility that the medical community wanted to treat by slapping bandaids on it (birth control, artificial procedures) while ignoring the problems that caused it. We have a family because an NFP doctor took the time to find the root cause (PCO + agricultural chemicals in the water—how can I not be passionate about the environment?). So when I see how abortion is the symptom of a host of other problems that are systemic in our culture, how can I fail to rage at those who want to address the symptom while ignoring the causes?

I don’t know what my “one” issue is, because dang it, they’re all equally important. Thank you very much, Enneagram 1. But I can’t do everything. For years, I’ve been trying to learn to respect my limits, to create healthy boundaries.

But sooner or later you have to say “yes,” too.

So for now, I am working a shift at the Food Bank into my schedule, and exploring volunteer possibilities with Refugee and Immigration Services. Because at least there’s a known entry point there.

I am not going to stop talking. But I’m going to start mixing more action in with it.

May 16, 2022May 15, 2022

Systems of sin are a real thing

There are several reflections rumbling around in my brain right now—about Scripture and women, about abortion.

But I promised I’d try to get more specific about the thing I only addressed vaguely last week—about getting down in the weeds and wrestling with how to apply the faith to the current context of the world.

So I think the best thing I could share this week is a reflection by Christopher Dodson, of the diocese of Fargo, North Dakota. I found it because one of my email subscriptions last week referred to “systemic sin.”

My faith journey in the past few years has really convicted me on the topic of systemic racism. There is so much pushback against the idea. The hullabaloo about critical race theory makes me absolutely CRAZY. The idea that we shouldn’t talk about the deep sins committed by U.S. institutions against Black and indigenous people, because it might make white people feel bad, must make God weep. One of the fundamentals of the Catholic faith, after all, is acknowledging our failures and confessing them.

I’ve spent a lot of time in recent months trying to figure out how I would ask fellow whites who resist racial reckoning to think about this. Here’s what I’ve come up with.

Things like redlining, lending discrimination, and the GI bill only applying to whites—to say nothing of the lack of reparations made to Blacks after abolition—have had long, long ripple effects. We, the whites, got the good side of this equation. Blacks got the bad side. The problems faced by Black communities now are direct, generational ripple effects of injustices perpetrated by systemic racism that endured for hundreds of years.

Now, none of that is my fault, or your fault, and it might not be your parents’ fault, or even your grandparents’ fault. It’s not our FAULT.

BUT.

Whose fault it is is not the issue. The point is, the consequences are here, and we, as Christians, have to deal with them.

This is not about trying to make whites feel bad. It’s just a clear-eyed, Jesus-centered, Gospel-driven, “love your neighbor as yourself” acknowledgment that I have benefited generationally from something that harmed another group of people generationally. And that still has impacts today.

And because of that, I have a responsibility to work toward fixing it.

That’s all. The hysteria surrounding critical race theory steals all the attention that needs to be on solutions, and directs it toward division and protectionism of SYSTEMS that have aided whites at the expense of Blacks. And it’s got to stop.

When I hear the words “systemic sin,” this is what I think about.

But when that term popped up in my email last week, and I knee-jerk reacted as above, I thought I’d better walk the walk and go look up the term to make sure I wasn’t imposing my own world view upon it. I wanted to see what people with more expertise had to say about it.

That’s how I found this article. Christopher Dodson is the executive director of the North Dakota Catholic Conference, and in other articles, he addresses abortion and other subjects of importance to Catholics. He’s no radical.

This piece takes a hard look at the topic of systemic sin, specifically referencing the Catechism and the Compendium of the Social Doctrine of the Church.

And now I will shut up and let Dodson speak.

Many Christians, including Catholics, have difficulty understanding that “structures of sin” may exist separately from our own individual sins. I suspect that certain religious and political strains of thought in the United States that emphasize the individual as paramount contribute to this problem. The false idea that we are autonomous individuals acting in isolation prevents us from accepting and addressing the social consequences of our sins and the sins of others. (continue reading)
Christopher Dodson

December 13, 2021

Open My Eyes…

I launched Intentional Catholic with the story of how the birth of my daughter, who has Down syndrome, turned my world upside down and made me see the relationship between faith and the real world in a whole new light.

You need a little upheaval every once in a while in your life to show you where your blind spots are. Celiac disease is doing this to me all over again.

In the past three(ish) weeks, I’ve realized how little attention I have spared for people with dietary restrictions. To be perfectly blunt, I’ve never taken it very seriously. I mean, I get the peanut thing. The shellfish thing. But a lot of other things I’ve regarded with a certain skepticism.

Of course, if someone has a dietary restriction I will accommodate it. But usually with some inner sense of, “I’ll do this to be courteous, but I’m not entirely convinced this is really a thing.”

Putting that in words makes me cringe, now that I’m on the other side of it.

It never occurred to me—despite hearing about it for years–how thoughtless we are about food. Everything’s got corn in it. In our case, everything’s got gluten in it: Chicken broth. Soy sauce. Taco seasoning. Breakfast sausage. (MEAT? REALLY?!?!?!?!?!)

The insistence of the Church—it’s in canon law, even!–about having to have gluten in Eucharistic hosts is just one more indication of how completely blind we are to anything that lies outside our western European culture blinders.

People with food allergies have a really sucky situation in our world, because we’ve developed a food culture that’s inflexible, crawling with cross-contamination and people like me three weeks ago, who shrug their shoulders and say, “Well, if you can’t have gluten, just don’t eat it, even if that means 98% of the food we have at this gathering is off limits. Here’s your ONE gluten-free option.” It’s a level of self-absorption I didn’t think myself capable of anymore, and learning what it feels like on the other side has been another bruising collision with the mirror.

I met a woman this weekend who was telling me that someone in her professional realm has been asked for years to bring her own food to parties, because they weren’t willing to provide gluten-free accommodation themselves. And now that they’re feeling ashamed of themselves for that level of un-hospitality, and are trying to do something about it, they’re discovering just how incredibility difficult it is to accommodate.

I have been listening to a podcast lately called “Why Can’t We See?” It’s an ecumenical trio of contemplative Christian pastors (one of them is Fr. Richard Rohr) who are exploring the biases that prevent all of us from seeing as God sees. I guarantee you will hear more about this podcast… it’s INCREDIBLE… but for now I want to draw out one of those biases: CONTACT bias. In other words, we don’t give credence to issues unless we get to know people who are impacted by them. We dismiss their pain until we love someone who fits whatever label we’re talking about. (Muslim. Democrat/Republican. Black. Gay. Disabled. You get the idea.)

One we do love a person in a label like that, it changes how we view the issues.

The truth of this bias is VERY clear to me in this holiday time, as our family is learning to navigate celiac disease for my daughter. I care about this issue now, when a few months ago, I wouldn’t have wasted a moment thinking about it, let alone doing anything.

There’s an action item in there. For me, for you. For all of us. It should be a wakeup call that Christian hospitality is way, way bigger than we have ever allowed it to be, and the prayer to open our eyes is not a metaphysical one, but a real, practical, rubber-to-the-road one.

November 30, 2021

Thoughts on the Eucharist in the wake of a diagnosis of celiac disease

Photo by David Eucaristu00eda on Pexels.com

At 6:15 the night before Thanksgiving, we got the call we’d been awaiting for nearly three months. My developmentally disabled teenager has celiac disease.

We were prepared, and had already started the transition to a gluten-free diet. But it was the next morning, at Thanksgiving Day Mass, when I really processed just how big a transition this was. I had already received Communion and was back in the music area playing my flute when I had the gut-wrenching realization that I hadn’t even thought about Communion for my daughter. There was no finding a gluten-free host at this point. The choices were to receive or not.

I let her receive. And when we got home that night I sent a note to my pastor to ask how procedures work at our parish so we’d be better prepared for Sunday.

Which we were–sort of. They put a host in a pyx and the head minister brought it over when she saw my daughter coming up for Communion. But the Eucharistic minister didn’t know what was going on and put a regular host in the pyx on top of the specialty host. So–cross-contamination! Yay!

We’re on week 1 of this transition, so it wasn’t the end of the world. There’s a learning curve here, for everyone involved. But as I watched from within the music area, unable to intervene, I groaned inwardly, glimpsing the magnitude of what we’re going to have to remember every danged week for the rest of her life.

And then after Mass, I learned that gluten-free hosts are specifically disallowed by the Church. They can do low-gluten, but not gluten-free.

The reason behind this I have not actually explored yet, though I gather it has something to do with “it can’t be bread without gluten.” (Of course, little wafers aren’t bread, either, but you know. And no bread in the history of humanity has ever consisted only of wheat and water. But whatever.) I was actually enraged, my inner mama bear ready to rumble, but I decided to follow my own admonitions to others and ask a bunch more questions, trusting–or praying, at least–that the answers would render the rage irrelevant. Which ended up being mostly true. I was given the specifications for the low-gluten hosts used in my parish. Out of 12 testing dates, 2 were over the amount of gluten we have been told is OK. The other 10 were below it. It’s enough for us to go forward–for now, at least. Until we get our feet wet and know more.

But here’s my problem. The Catholic community has a huge gap in understanding of the Eucharist. We have people who, on one side, don’t take Real Presence seriously enough. And on the other, we have those who take it so seriously that they believe gluten in a host either no longer exists after consecration, or that it’s irrelevant because God will protect us from any harm coming from the gluten in the host. (I’ve heard both of those in the past week.)

I’ve said before that I am not convinced the problem of Real Presence is nearly as dire as it has been made out to be. I think the wording of the questions on that sensational survey was the problem.

I do, however, think both of those latter beliefs are a big problem–indicative of a superstition mentality among Catholics and, by extension, evidence of a need for greater spiritual maturity.

Our bishops are aware of the problems, or they wouldn’t be focusing on the Eucharist in that new document. And yet apparently, a bunch of people wanted to boil that catechesis down to “pro-choice Catholics should be barred from Communion?”

Thank God, they didn’t go that route. The question of whose politics mirror Catholic teaching and whose don’t would have wiped out virtually every politician, regardless of party. Death penalty is a pro-life issue, too. And racism, as the US Bishops themselves said.

But I’ve got to say, if our focus around the Eucharist is on how to put up as many barriers as possible, then we have at least as big a problem in the institutional Church as we do among the laity.

Thank God, I am intelligent and well-educated in my faith, and I had a line of options queued up for my daughter. But if the Eucharist is as critical to life in the faith as we claim to believe it is, we should be working to make it EASIER for everyone, regardless of medical condition, to receive safely. We should NOT be putting obstacles in the way.

March 17, 2021

A Post For All Who Call Themselves Pro-Life

Today, as we march toward World Down Syndrome Awareness Day this Sunday, I’m harvesting another post I wrote long ago on my personal blog–one that marks a big step on the journey I’ve often referenced here, the journey from a black-and-white world view to the recognition that all issues have to be weighed together, because they all exert influence on each other.

I wrote this in 2011, and I’m going to leave the text exactly as it stood then.

My chromosomally-gifted girly-girl at age four, which would have been around the time this post was written.

A year and a half ago, I was working on legislation to ensure that children with disabilities weren’t denied therapies because of their disability. Our sponsor (my mom) was approaching her term limit, and we needed a new one. We knew we had to find a Republican, because the legislature is Republican-controlled. We also knew that putting mandates on insurers could be a tough sell. Still, we felt sure people on both sides of the aisle would recognize that this issue was bigger than political philosophy.

I contacted a former Republican state senator who was well-connected and reportedly supportive on disability issues. I told him what we were hoping to accomplish, and asked him to suggest people to approach as sponsors.

His reply raised my blood pressure for weeks afterward. (Eventually, its presence in my inbox became such an open sore that I had to just delete it. Just thinking about it still gets me going.) However he intended it, it came across as condescending: a man clearly much wiser than this do-gooder little girl, and determined to teach me the error of my ways. His philosophy went something like this:

Insurance is not meant for ordinary care. It’s meant for emergencies, for extraordinary circumstances, cataclysmic events you can’t anticipate. Therapy is normal, ongoing care for kids with special needs; thus, insurers shouldn’t have to pay for it unless they want to. And the government certainly shouldn’t be putting a mandate on them. It’s the responsibility of the families to provide for their children what they think is important. He understood how tough this was for families to accept, but nonetheless that was the way it was.

I’m sure you can appreciate why I hit the roof when I read this email. Never mind that raising a child with special needs is extraordinary circumstances and something you often can’t anticipate. I had the good sense not to respond at all, because there wasn’t one polite thing I could have said. But believe me, I’ve composed many, many responses in my mind. And the more time passes, the more convinced I am of the grave flaw in his argument.

Because this man calls himself prolife—by which he means that he believes abortion is wrong. But respect for life is so much bigger than abortion. It’s an attitude that should permeate all of life, in all its forms and manifestations. Prolife politicians are very good at being outraged by the systematic termination of “imperfect” children. But if you’re going to ask people to shoulder the responsibility of caring for children with disabilities, you can’t abandon them once the child is born.

Missouri has a great program called First Steps, which provides these services. But in rural areas, it’s hard to find providers to come to the home. And First Steps ends at age three, after which kids enter the school system. We’re lucky—we have a great early childhood program where I live. But we’re in an urban area. What about families in small towns without the resources to provide for kids through the schools?

When I was serving on the Children’s Therapy Act committee, we heard stories of people who had to sell their homes to pay for their kids’ treatment, people who deliberately stayed in low-paying jobs so that they would qualify for Medicaid, which does cover these therapies.

How dare politicians stand on a soapbox, claiming that all life is precious, that children with disabilities have a right to live, and then turn their backs on families who actually have them? Do they not realize that, unlike insurance companies, parents can’t negotiate reduced rates? Do they not realize how crippling the expense of therapy becomes? Or do they just not care?

Political philosophy is all well and good, but it cannot be so rigid that it leaves behind those it purports to serve. I happen to think that minimizing regulations is a sound principle—within reason. But the reality is that power companies aren’t going to implement environmental reform if it’s going to cost them money. CEOs aren’t going to give up their huge bonuses just because the economy’s rough on the little guy. Some things MUST be mandated, or they won’t happen at all.

Doesn’t it make more sense to get these kids the treatment they need to become productive, (tax-paying) members of society? And if we don’t, if we shove the disabled population into a corner, behind a wall where their lack of function doesn’t make everyone else uncomfortable—if we don’t show them the respect they are due as human beings by providing them the tools necessary to integrate into society—then how can we be horrified and outraged by the eugenics of aborting the “imperfect”?

I share this example today in the hope that it will open people’s eyes to the many ways besides abortion in which life is disrespected. We’re accustomed to hearing about certain issues: death penalty, abstinence education, end-of-life issues—but respect for life is everywhere, all the time, in every single issue we face as voters. As we head into an election cycle, I beg you: challenge your candidates to man up and be consistent. If you’re going to respect life, you have to respect life in all its forms.

March 15, 2021

“Demanding and even tiring”

I’ve been swamped lately with other professional obligations, and Intentional Catholic has had to take a back seat. When I came downstairs this morning, I knew I needed to dig back into Fratelli Tutti, but I was not prepared for the section I was reading to speak so powerfully to the event coming up next Sunday.

March 21st is World Down Syndrome Day, chosen because Down syndrome, or Trisomy 21, is THREE copies of the TWENTY-FIRST chromosome.

For fourteen years now, Down syndrome advocacy has been a driving force in my life. I was not prepared to be a special needs mom. Having grown up in the pro-life movement, the moment when I had to confront my own distinctly un-pro-life reaction to the news was a pretty bruising collision with the mirror.

The point Pope Francis makes in this excerpt really hit home after a decade and a half of mighty struggles on behalf of our daughter. “A demanding and even tiring process,” he calls it, and let me tell you—you have no idea just HOW demanding and tiring.

But he’s right: this demanding and tiring process DOES contribute to the formation of a conscience capable of acknowledging each individual as unique and unrepeatable. I would not be where I am today, in my growth as a Christian, had God not placed this precious gift in my womb, forcing me to look in the mirror and recognize a host of inconsistencies between what I claimed to believe and how those beliefs conflicted with other deeply-held convictions about how the world was “supposed” to work.

I will never be done grappling with my profound failures around these issues, but I am grateful for the gift of my child, who to this day stretches me beyond what I think I am capable of.

For the next week, leading up to World Down Syndrome Day, I will share here some of the reflections I’ve written or presented over the years as I wrestled with all this.

January 6, 2021

Putting a face on the reason masking is our Christian call

We had two altercations with people over masks last weekend.

First of all, let me say that I try very hard not to go out at high traffic times. But when one’s husband works full time and you have things you need to do together, sometimes there are only high traffic times.

I’ll just describe one of our interactions. I asked one man who had his gaiter hanging around his neck to please put on his mask. He responded by rolling his eyes. Let me tell you, it’s quite something, seeing a 60-something white man roll his eyes like a teenager. He muttered something about not living in a communist country, or something equally (pardon my bluntness) idiotic and totally at odds with both Christianity and reality.

It’s mind boggling, how wearing a mask to protect the health of others got twisted into a political wedge. A few months ago a fellow Catholic on Facebook posted that it really bothered her that the Church had “bought into” the narrative that brotherly love required us to mask and distance.

I was dumbfounded.

So I’m here today to put a face on “brotherly love.”

This is my daughter. She is charming. She loves to sing. She loves to dance. She loves babies and ice cream and pasta. Since she was a toddler, she has had an uncanny ability to enter a room and instantly zero in on the one person who most needs the love of God. She goes to them and loves them.

Wherever she goes, she brings joy and love. She brings God, in other words, without ever speaking a word about it.

She also has Down syndrome.

When she was six weeks old, she contracted RSV. She had floppy airways and a heart defect that caused her blood to spin instead of properly oxygenating. She spent more than a week on a ventilator. For children that age, 93% oxygen saturation is the threshold for hospitalization. Hers dipped to the 40s every time she had a coughing fit. The doctors told my husband to “prepare himself.”

At 6.5 months, she had heart surgery to repair her heart. They stopped her heart. Put her on a heart-lung bypass. And she was on a ventilator again.

We thought that would be the end of respiratory issues, but it wasn’t. At 2.25 years, she developed pneumonia and was in the ICU, on a ventilator, yet again.

Since then, she’s been very healthy. My rational mind tells me she’d probably be fine if she got COVID, but the fact is that her airways are naturally floppy, and now they’re scarred from multiple trips down ventilator lane.

My daughter puts a face on the reason for masking. We make this sacrifice in order to protect the most vulnerable among us.

Nobody likes masking. Nobody likes being forced to hold loved ones at a physical distance. Nobody likes any of this. But if that’s what it takes to protect the life and health of others, then that is the Christian call.

October 15, 2020October 15, 2020

Being Catholic in a Messy World

This past summer, I was honored to be invited to speak at the National Association of Pastoral Musicians national convention. Among the presentations I gave was this one, “Being Catholic in a Messy World.” I was asked to give a fifteen-minute reflection on what I mean by “Intentional Catholic.”

I have so many thoughts, I never imagined it would be a difficult talk to write, but it was–because the topic is so huge. The through-line that eventually emerged was how I wrestled with being “pro-life” in the wake of giving birth to a child with Down syndrome. I’ve often said that my daughter’s birth was the earthquake that changed everything for me, though I didn’t know it at the time. This is that story. It encapsulates many of the difficult issues we’re wrestling as a nation (badly). I hope you’ll set aside a quarter hour to listen!

(Thanks to GIA Publications, my music publisher, for making this available.)

June 1, 2020June 1, 2020

In Which I Wrestle With Race

I was so clueless.

I went to a park to meet a friend and her son, my godchild, to social-distance celebrate a birthday. She was upset, and I didn’t immediately realize why. She had to lead me almost all the way there.

I have rarely felt the privilege of my own skin color so keenly.

Because unlike me, she and her son are not white. And while the events of the past week, beginning in Minnesota and spreading all over the country, are a source of grief to me, for her they are inescapable realities that she has to wrestle with on a daily basis.

What is the future for her child? For all her male loved ones? Can they not go running in their neighborhoods? Do they really need to be afraid every time they see a police officer?

We rarely recognize how deeply our unconscious biases affect us. How many ways we have taken worldly values (self-reliance, personal responsibility, small government, and money, always money–it’s my money, no one has a right to it, especially a central authority, even to help lift up vulnerable populations) and tried to use our faith to justify them.

It’s not that those values are without merit. Of course they have merit. But they so easily become idols, when the Gospels make it clear that people ALWAYS come first.

As my friend and I talked, I could empathize–sort of. The cluelessness of white America is, for her, something like the cluelessness I encounter about issues surrounding disability. Whenever I share a frustration I experience with institutions that interact with my daughter–health care, schools, etc.–I get pushback from people who oversimplify the situation. People who don’t understand that the pat solutions that seem so obvious to them simply don’t work. The tangled complexities of the situation are invisible to those outside it. Even those who are closest to us generally don’t “get” it, because they haven’t experienced it themselves.

Last fall I tried to explain our family’s struggles with special ed to a group of health care workers who were studying issues surrounding special needs. I thought I could tell the story in twenty minutes. At twenty-five minutes, I realized I was only a quarter of the way through, and the audience was zoning.

Even an audience of people most poised to understand really couldn’t “get” it.

So I understood, on an intellectual level, my friend’s deep frustration and woundedness. But I don’t *understand* what it’s like to be black in America. Not at a deep, visceral level, the way the black community does.

The only solution to all this is to “hear with open hearts,” as the pastoral letter from the US Bishops on racism teaches. To accept that what we cannot “get” at a visceral level is nonetheless real, and to recognize that it calls for a response from us. Not just an express-my-outrage-on-social media, write-a-blog-post response, but a “don’t blame the victim for the way things got out of control” response. A “hold my leaders accountable for their inflammatory words and lack of positive action” response. A “quit giving them a pass because they check the box on a single issue, regardless of how poorly they reflect the rest of my faith” response.

Because this cannot continue. It must change.

It MUST. CHANGE.