This One Is For the Caretakers - A Letter from Madison Chastain
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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.***
Sisters, there’s not a lot of space made for disability (despite what handicapped parking spots might have you believe). And when we see a lack of space for those we care for, it often feels like there isn’t space for us.
One lady could not understand my mother’s frustration with her sitting in a companion seat at the theatre.
“Can’t you just sit him in the open space and you sit somewhere else?” she said to my mother.
No mother should have to justify the severity of disability or the importance of companionship.
Having studied theology in college, I am unfortunately aware that “Disability Theology” and “Disability and the Church” are still merely up-and-coming search engine entries. My mother has struggled to find support groups specific enough to relate to my brother’s obscure disabilities. I’ve had to explain to youth ministers why my brother doesn’t have “that kind” of disability and won’t be able to attend the special needs program they’ve worked so hard to create. What already exists sometimes isn’t enough. Not every parish has it, not every degree program offers it, not every person is going to have the respect for human dignity that seems so obvious. But I’m trying to make it. I see you. I see the crumbs on the floor and the nights spent sleeping on the hospital couch, and the laughter that’s too loud at the quietest parts of Mass.
I know that the vocation of caretaker is a hard one that doesn’t seem to offer a lot of choice or freedom. After a particularly stressful one of Matthew’s major surgeries, a supervisor of mine in undergrad told me to prepare for the potential that this may be my life one day. If something were to happen and I became sole caregiver to my brother, these sorts of worries would be my constant thoughts and responsibility. I have never felt so much sorrow, or had my future thrust at me with so much force before.
These feelings can be exacerbated when there isn’t a clear system of support for caretakers, specifically within the Church. But please see me and join me. Let’s make community together, caretakers and those not touched by disability alike.
Let’s smile instead of stare. Ask if we can introduce ourselves. Hold the door open. Volunteer. Make that courageous comment about inclusion in the spaces where we’re leaders. Remember that open and honest nerves are always better than silence.
"Let’s smile instead of stare. Ask if we can introduce ourselves. Hold the door open. Volunteer. Make that courageous comment about inclusion in the spaces where we’re leaders. Remember that open and honest nerves are always better than silence."
If you have them, expose your children to the wonders of a different genetic makeup. Talk to them about how God empowers those who are special to love in special ways. Make advocates out of those around you.
Ladies, our strength lies in affirming each other and our dignity. Those with disabilities and their caretakers live every day as champions of intrinsic human worth. Let’s learn from them, join with them, and take steps to expand their space in our Church.
Get to know Madison
Tell us a little bit about yourself!
My name is Madison Chastain. I am 22 years old, and I am just wrapping up a year of volunteer teaching as a Lasallian Volunteer in Oklahoma, though I am originally from Northern California. Having studied theology and religious studies in undergrad, I’ve spent this past year teaching middle school religion, covering everything from the Old and New Testaments to Sacraments, Church History, and Catholic Social Teaching. I like reading and writing (I also studied English in undergrad), and I try to box once every weekend. This October I will start my Master’s Degree at the University of Chicago’s Divinity School. I was an Air Force brat growing up, moved around a fair amount, and still love to travel.
How does your Catholic faith affect the way you live your day-to-day life?
My Catholic faith lurks beneath every aspect of my day. I talk to God throughout the day (I like the idea of talking to God more casually and intimately. Like Teresa of Avila. She’s goals.) I’m a religion teacher at a Catholic middle school (every part of that sentence requires grace: religion, teacher, middle school). I live in community (also a huge grace requirement. And mercy too). And I’m a sister to someone with special needs. Making sense of the crazy stuff that happens every day is only possible, for me personally, by sifting it through the lens of Catholic faith. “Why did God let that happen? What do I learn from that? How do I best treat that person to do justice by them?”
From one Catholic woman to another, how have you discovered your sense of belonging in the Church?
My sense of belonging has been definitively tied to the realization of my capacity to be a leader specifically within a Catholic faith-based context. This first sprouted in high school youth group, but really came to fruition during my time in undergrad working in liturgy and campus ministry and as a student of theology. Working in programs designed to foster Catholic faith and studying subjects designed to increase understanding of it placed me in situations in which I could provide answers, support, and clarity to my peers—Catholic and non-Catholic alike-- about a variety of “Catholic” topics and struggles. Feeling empowered in this way, like I could communicate the beauty of the Catholic Church to others and help foster faith however it looks for whoever is in front of me, continues to motivate both my personal and professional goals.
What’s the most empowering piece of advice you’ve been given as a Catholic woman?
I cannot think of a single piece of advice I have directly received from a Catholic woman that stands out more than the superb and multitudinous examples set for me by women in positions of Catholic leadership. Be it directors within collegiate departments of mission and ministry, professors of theology and religion, or youth and liturgical ministers. Their examples say to me “you can do whatever you put your mind to in this Church.”
Tell us about a woman who inspires you. What lessons have you learned from her? How has she influenced your life?
Oh, it’s my mom for sure. The biggest lesson my mother taught me, that I carry with me every single day, is to surround myself with people that lift me up and make me feel good about myself. She always told me that it was better to sit by myself on the school bus or play by myself on the playground than submit myself to the company of people who tear me down. Since I was small, my mom and I have shared the song “You Are My Sunshine” and as much as sunshine seems to follow me in different stages of my life, so does my mother’s reminder to “shine as bright as I can.” Meaning: Try my absolute best and give everything I can because that is the best I can do. And if I do that, then I can be proud, no matter what happens or what anyone else thinks. My mom is my brother Matthew’s everything, and she is the picture of grace, patience, and willingness to accept what God has in store for her. She is strong, passionate, funny, and deeply kind. If I’m half the woman she is by the time the Good Lord takes me, I will have succeeded in accomplishing something truly miraculous.
How is Jesus challenging you to greater love in your current place in life?
Living in intentional community as a part of my volunteer service has challenged me in many ways. Learning how to love people whose temperaments are very different from mine, walking with those I don’t know very well through tragedy and grief, being in a long-distance relationship, and re-learning how to love myself in the midst of physical and mental health shifts have all been great obstacles I’ve done my best to face with patience, understanding, and mercy. As I go on to grad school, I know that moving and making new friends and working with peers of many faiths and backgrounds will undoubtedly challenge me in many similar ways.
What’s a dream you’d love to achieve in the next 10 years?
I want to have a book published. About what? I don’t know. Matthew probably.
What’s the best smell in the world to you?
Fill in the blank
A typical day in my life looks like…
Not wanting to wake up early. Not brushing my hair but always washing my face. Carnation Instant Breakfast. Driving. Teaching someone something about what it means to be Catholic. Journaling. Facebook Messenger. Instagram. Gmail. Laughter. Sleep. And for a truly accurate description replace every period in this list with “food”.
My favorite quote is...
“If we wait until we are ready, we’ll be waiting the rest of our lives.” –Lemony Snicket
I feel most inspired when…
I am outside in the sunshine and the quiet.
The Catholic Church is…
a beautiful, faith-filled, global religious institution with significant capacity and responsibility to shine a light on and defend the dignity of all people.