A Letter to Caregivers

This is the first piece I wrote and had published on the internet. It was spring of 2018, I was living in Tulsa, and had entirely lost myself in religious community and the 10 hours of teaching I was doing every day and as such, felt like I had lost my ability to envision myself in the Church. I’m feeling pretty similarly, today.

I found so much solace in the letters being compiled at The Catholic Woman, a then-new online space for women to write letters to women who had had similar life experiences, encouraging them that there is space in the Church for their unique experiences and wisdom.

When considering the spaces I felt were lacking then, in 2018, and what I might contribute to this library of letters, I reflected back on the previous times in which I didn’t feel there was space for me in the Church, that doing so might enlighten where I could discover space amidst my then-present wanderings. I’m doing similarly, today.

I wrote my letter on disability. Specifically, disability caregiving. I had yet to go to graduate school. I hadn’t even decided where I would go! I hadn’t encountered secular Queer and Crip Theories about the body. I hadn’t jumped head-first into Christian disability theology. All I knew was my own experience as a caregiver of a sibling with profound cognitive and physical disabilities, and I was emboldened by the sliver of theology I had learned in undergrad. To be frank, I was at the peak of that pesky Dunning-Kruger bell curve (which I write about here.)

When I was growing up, not-belonging in Church (and in many other social spaces, like in stores and barbecues and friend groups) was almost entirely contingent upon Matthew not belonging. I didn’t feel comfortable at Mass because Matthew would be loud, people would stare, and he would potentially kick the paten out of the priest’s hands at Communion time, scattering Jesus across the floor to a chorus of gasps. When we moved, not belonging at Mass looked like not being able to fit his wheelchair into the old Church and down the aisle. There was no place for him to sit without taking him out of his wheelchair and wrestling him into the pew (which, with his behavioral difficulties, is not realistic.) At that early age of not-belonging, my youngest brother Michael was also young and impatient. At first he was a baby, crying and pooping and screaming and needing my mother’s comfort. At the later stages, he was whiny and insatiable and tantrum-ridden.

My perspective on all of this not-belonging was a place of young shame. Of immense responsibility as my mom’s primary caregiving support. Of anger that my dad was deployed or working or not wanting to come to Mass with us (though, he eventually came around and even ended up converting.) It was also my fledgling notice that disability was not welcomed in the Church, despite being present in so many Gospel messages of Christ healing the blind, deaf, and paralyzed. It was the beginnings of the fire that would be ignited about the hypocrisy of loving those on the margins while scoffing at them when they laughed loudly during the consecration because they found the tinkling of the bells enjoyable. It was the beginning of my questions about welcoming all to the table while not looking Matthew in the eye.

These were my first tastes of not-belonging at Church, and it was these moments that brought me solace in 2018 as I sat to write my letter. It was that not-belonging that I wanted to speak to.

As such, the title of my original Letter to Women was “Making Space for the Disabled.” It was meant as a riff on the lack of physical space made for Matthew and others like him, in so many situations, some of which I spoke to in the letter.

And it worked! I found a space for myself in writing and studying disability and Catholicism, a belonging I continue to lean into today. I went on to study it in graduate school. I pursued volunteer opportunities that would foster relationships with disabled persons. I wrote more about it on the internet. I combatted my not-belonging by writing about not-belonging.

But now, as I look back on the letter, as I attempt to house the sum total of my writing these last 3 years for various publications on this blog in some form or another, with the experience I’ve gained in my study and work and friendships, I can see that in some ways I was conflating the experience of the disabled person with the one giving them care. These experiences are not the same.

However, the experiences of giving care to a disabled family member are some of the most intimate you can get when not disabled yourself. You feel the stares, you recognize the inaccessibility of a space, you field the ignorant questions if your loved one is nonverbal, and you advocate on their behalf if their cognition limits their self-determination. This was, and in some ways still is, my experience.

I also recognize that some may bristle at the idea that I, as a sibling, would in some ways equate myself with other kinds of caregivers, whether they be parents or teachers or nurses or aides. I recognize that the ways my parents have given care supersede some of the ways I was required to give care (but it was a requirement, because of the relationship I had with my parents and siblings, even if others might view it as my choice to serve my family.) But as I learn more about being a sibling to disability, and as more and more siblings share their own stories online, I invite the patient consideration from both outside and internal voices that I did experience a comparable pressure and responsibility to give care that many don’t experience until they are the parents of their own children. That I did experience a comparable responsibility for another individual’s safety, health, nutrition, and happiness that draws me into conversation with similar responsibilities from various walks of life.

My experience of responsibility was then and remains today valid.

For these reasons, if I could go back, I think I’d change the title of my letter to what I’ve named it here: A Letter to Caregivers. Nowadays, I could write a different and better letter on what it would take to make space for disability for disability’s sake, and it would start by passing the mic to a disabled person and going from there. I still think my letter speaks to the heart of making space for disability, for the caregiver’s sake. For that reason I’m still proud to host my letter here. And it continues to prod me to write more here about what it was really like being a sibling to Matthew. (So more on that is coming soon.)

Here’s the opening of the letter, and I invite you to read the rest of it at The Catholic Woman:

Dear Family,

This ones for the caretakers. For the people who don’t buy white clothing because it’s just going to get dirty. 

My younger brother Matthew was born with Cri du Chat and DiGeorge Syndromes. Combined, these chromosomal mutations look a little like Cerebral Palsy, and a lot like cognitive delay, a compromised immune system, a pacemaker, a lack of consistent toilet use, and a love of crackers, cereal, and a good restaurant. 

I have always been involved with Matthew’s care. I have confronted the stares, the lack of a wheelchair ramp, and the soiled bedsheets alongside my parents and other younger brother Michael.

Lesson: Taking someone in a wheelchair to the movies requires two spaces. A space for the wheelchair, and a seat beside them…” To read the rest of the letter about how I LEARNED this lesson, click here.

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faith family

Rethinking St. Joseph

St. Joseph is a saint who follows me around. I’ve belonged to more than one St. Joseph parish, and my eyes always well up a little when I happen across a statue or a prayer. To be honest, I’m not happy about St. Joseph’s lingering presence. I have often thought of him as a shadow I didn’t understand (which is, interestingly, one of the ways Pope Francis charactered St. Joseph in his most recent letter, as a saint “in the shadows.”)

So when Pope Francis announced the upcoming year as the Year of St. Joseph, I had that familiar tingly “he showed up again!” excitement, followed by confusion. What does it mean for a year to be St. Joseph’s? Who is he? Why do I gravitate towards him so much?

I let the first months of the new liturgical year roll by and then like a whisper, while kneeling during the Eucharistic prayer at Mass a few weeks ago, after having my first panic attack in years just before the service began, I felt it in my chest: He’s the dad saint.

I decided that this whisper was enough for me to finally pay some attention to the liturgical year’s designation. I remembered seeing the Consecration to St. Joseph by Donald Calloway being advertised last year and felt like a deep dive and commitment to getting to know St. Joseph was the right move for me to make.

Now, I hate “consecration” language. Not because I don’t think the notion of being consecrated is a beautiful or good thing: it is. But most commonly in the circles young Catholic Madison swam in, “consecrated” has always been paired with “virgin” (and I don’t really like the history and use of that word either.) I hate that so often, discussions of consecration and women’s sexuality revolve around the most interesting thing about a woman being her virginity. It’s the least interesting thing about Mary, it’s the least interesting thing about the single people you know, and it’s the least interesting thing about vowed religious too. Even with St. Joseph, his liturgical designation is “most chaste spouse.” I bet there are a million things more interesting about St. Joseph than his sex life. Consecration is a commitment, and it’s a commitment to more than virginity. It’s a commitment to the vocation you’ve chosen, that God has set on your heart.

So what would it mean to be “consecrated” to St. Joseph? There was (and is) still a little part of me that says, “Is it not better to just talk straight to Christ instead?” I haven’t felt a single nudge towards a Marian consecration, despite its greater popularity. But St. Joseph has followed me around. And after that teary Mass, there’s a not-so-small part of me that yearns to rewrite the feelings that arise when considering the phrase “you’ll have to tell your dad.”

For my non-Catholic friends who still aren’t sure what it means to be consecrated to a saint (or maybe you’re still confused about what the Catholic relationship to Saints is in the first place): Saints are really cool holy dead people who did something awesome on Earth and now hang out in Heaven with Jesus. If you were friends with a famous person who had a lot of money to spend on causes you care about, you would tell them often about that cause to drum up support banking on your mutual respect. If something comes up in your life that you want someone to be your prayer wingman on, you can pray to the Saint who cares about that something and they put in a good word for you with the Big Man Himself.

For example: If you’re a Wiedenfeld-Chastain grandchild who lost their favorite baseball hat, you pray to St. Anthony, the patron Saint of lost things, and you find it two months later in your parents’ vacation Yahtzee bag.

That was maybe one too many family jokes for one blog post, but hopefully you get the picture. You have a need, you pray to the Saint who cares about the subject matter of that need, they advocate for you to God.

Now consecration is a commitment on your end to give special consideration to a Saint that means a lot to you. So in doing a consecration to St. Joseph, I’m committing to praying to St. Joseph regularly, and entrusting to him ALL the things, with the understanding that he is real and present and cares for me.

Having a better understanding of this definition of consecration, I bought the Consecration to St. Joseph book, and was pleased that I hadn’t missed the most common start date: Today (as I write this), February 15th. I will complete the 33 day of prayers and meditation on St. Joseph’s life on his feast day.

But I also plan on spending the next 33 days (and then some: Hallow has dedicated their whole Lent challenge to St. Joseph!) offering up my commitment to a relationship with St. Joseph for the sake of some unusual intentions that have risen in my heart as I’ve begun my preliminary preparation for the consecration. I read Pope Francis’ letter on St. Joseph, “Patris Corde,” and found myself reflecting on who and what St. Joseph seems, to me, to have a soft spot for. And many of these things seem, to me, to not have many other places to call home in the Church.

St. Joseph is the patron of the UNIVERSAL Church. Like I write about in Theology for EveryBody’s “Why” Statement, Catholic might literally mean universal, but what we think of as universal—equal consideration, equal participation, and diverse and fair treatment—are not actually reflected in our church spaces or in our society. To that degree, St. Joseph is the defender of those for whom a universal church home is most desperately needed.

St. Joseph is entrusted the Holy Family, and thereby entrusted with our notions of family writ large. Family looks different than it did back then. And while many Catholics, the author of the St. Joseph consecration book included, like to use language of “war on family” or “family being under attack,” I vehemently disagree that this is what is happening.

Let’s be extremely plain: When Christians, especially Catholics, speak about “losing family values” or “war on family,” they’re talking about gay folx. End of story. I mean, maybe they’re also talking about families with children resulting from sex outside of marriage, but for the Church, these sins are the same.

Perhaps no one has ever laid it out explicitly, but I am happy to do so: The core reason homosexuality is a sin in the eyes of the Church stems from the Church’s beliefs about the components of sexual intimacy. For a Catholic, sex must be both 1.) unitive and 2.) procreative. Gay sex can’t naturally be both. That’s it. That’s the problem.

Well, the problem Catholics and Christians generally make of it is that “gay culture” promotes behaviors that lead to non-procreative sexual intimacy. Dating someone of the same sex, expressing any sort of physical affection, having children, etc. The slippery slope actually slides back even further; anyone who behaves “conventionally queer” is considered to be “flaunting a sinful lifestyle.” But that has more to do with conventional notions of gender norms #HarryStylesInADress. For the sake of this article, let’s keep with the sex problems.

What this all ultimately means is that LGBTQ+ people who identify as Catholic but pursue romantic relationships and families have an extremely difficult time being welcomed into the Church. Even though the sins they have technically committed are no greater than a straight couple that has non-procreative sex or who pursues assisted reproductive technologies, because of the stigma against LGBTQ+ folx, their sins are cast back in their faces as far more egregious.

What might our Church look like if the pews were filled with queer folx? With families whose parents were the same sex? Would we be uncomfortable?

As I was reading about St. Joseph, these are the families that came to my mind. These are the families truly under attack. And if I could invite you to think imaginatively with me, not only do I think there is precedent to entrust St. Joseph with these families, but I also don’t think working for this vision of the Church “encourages lewd behavior.” Jesus came to dine with sinners. All of them. The straight ones and the gay ones, amen hallelujah.

This is certainly not the only unusual community, family, or issue I think we might entrust to St. Joseph. St. Joseph’s own life, the precious little we know of it in Scripture, shows a man largely abiding by societal norms, but willing to quietly bend them for the sake of Mary’s well-being. It is through the message of an angel that St. Joseph fully breaks with the societal tradition and welcomes a woman pregnant with a child that is not his into his home as his wife. (Matthew 1:19-25)

St. Joseph is an example of what it looks like to believe what a woman says about her body and her sex life, without shaming her.

St. Joseph is an example of what it looks like to father a child who is not biologically yours (whether via adoption, fostering, or as a stepfather.)

St. Joseph is an example of a spouse whose wife and child are more famous than he is! And he doesn’t seem particularly threatened…

St. Joseph is an example of someone who works quietly, tirelessly, perhaps without adequate recognition, to support an unusual family dynamic. He is someone who perhaps dreamt of a family situation different from the one he was given.

St. Joseph is patron of workers. Of craftsmen, artists, those skilled in some sort of trade. You know, the work that kept us hopeful during this pandemic. Patron of the #RatatouilleMusical, if I may.

St. Joseph is called the “Terror of Demons.” Might I invite us to consider our actual demons? The public shame and oppression of women and their sexuality. Physical, sexual, emotional, and spiritual violence against women. Our refusal to accept unconventional families, like those named before, or those who look, vote, or pray differently than we do. Those children who are excluded or rejected from their families, especially those who are LGBTQ+. The rejection of arts and craftsmanship produced by skilled small business owners in favor of soulless, mass-produced items that only make the rich richer and the planet deader.

Might these be the demons St. Joseph cares for? To be certain, they are things Christ cares about, for He is ultimate and perfect love. It is reasonable to believe Christ learned what it meant to be a protector from His father, and so it is reasonable to think that same father might teach us a thing or two as well.

In the Consecration to St. Joseph book, St. Joseph is described as “alert to God’s wonders.” At the very least, I am looking forward to spending these next 33 days praying for greater wonder and awe. I will be praying for an increase of willing tenderness that I might show my partner and my family. I will be offering up my current crossroads of professional discernment, that the patron saint of workers might place my work at the foot of Christ for Him to kick down the road He wants me to set out on. And I will be praying for all unusual families. For families who don’t see themselves reflected in our pews. Who are what our favorite Instagram counselors might identify as dysfunctional. For couples and parents and children.

There’s a part of me that thinks, if I’m misinterpreting what St. Joseph might mean for me and for the church, that he’ll just stop showing up. But that’s not what a loving father does. And so I’m 1 day down and 32 to go, already blessed by the consistency of a commitment between father and daughter.

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