A Letter to Caregivers

Originally Published as “Making Space for the Disabled in the Church: A Letter from Madison Chastain” for The Catholic Woman

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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