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Disability and Catholic Feminism: The Wide Reach of Ableism Narratives

In the first part of this series on disability and Catholic feminism, I wrote an introduction to disability advocacy and vocabulary. As you engage in online spaces, you will often see disability advocacy label itself as working against “ableism.”

Recognizing Ableism

“Ableism” is a broad term that refers to treating others (and ourselves!) better or worse based on physical ability, health, or capacity. It is important to recognize that ableism is always a functional negative — even if the things you say seem positive — because it insinuates that the opposite (disability, sickness, or injury) is negative. For example, my brother Matthew uses a wheelchair when we are out of the house. This is not because he can’t walk, but rather because he can. And he is fast and strong! Since he doesn’t understand boundaries and the differences between things we do and do not own, if we go to Target and he’s not in his wheelchair, he would tear toys from their boxes faster than lightning! He would grab people we don’t know thinking they are friends, and if we heard an unexpected loud sound, he might become frightened and collapse onto the floor, unwilling to move. He knows that he is safe and secure in his wheelchair.

However, many of my friends first meet him when he is in his wheelchair and assume that he can’t walk. If they find out he can walk and say, “Oh, good! He’s not as disabled as I thought!”, we could consider that statement to be ableist, because it assumes that people who can’t walk are “worse off” than those who can. Even if such a statement is well-meaning, it sows a seed of looking down on others.

The Intersection of Ableism and Feminism

Ableism and feminism intersect in many ways, in no small part because for centuries, women were treated in medical settings that viewed men as the standard and, therefore, saw women’s bodies as “atypical,” a word often used nowadays to refer to disabled persons. Women’s bodies are still treated in many medical schools as the non-normative, or non-standard, version of the human body. Gynecology and obstetrics are specializations not all residents choose to pursue in depth, and even then, many issues of women’s health may actually be more accurately housed under other specializations. Not all doctors have experience with the unique components of the female body, and not all women’s health problems are traced back to the womb.

We see these issues in the ways that birth control and weight loss are viewed as the catch-all solutions to a variety of women’s health concerns, replacing exploration into their root causes. Women’s pain is often taken less seriously, and these issues are even more likely to occur for BIPOC (Black, Indigenous, and people of color) women. The maternal mortality rate is astronomical in the United States, particularly for women of color. These problems can be situated under the umbrella of ableism and can be masked when we settle for the narrative of “strong women” without asking why they have to be strong in the first place.

In my last article, I talked about vocabulary and how we can be disability advocates in ways as simple as changing the terms we use and share online. When we discuss social narratives, we are talking about the stories, feelings, and beliefs we cultivate through experiences and media. Beyond interpersonal relationships, larger narratives are at work in the entertainment we consume. When we think about the pressure placed on women’s bodies, it is easy to see how the media impacts our opinions. Hollywood actors, fashion week models, and Instagram influencers all present, through their success, narratives about which “kinds” of women are beautiful.

Feminism and ableism also intersect prominently in the areas of weight loss and wellness culture. Women are constantly sold ableist lies:

“You’re always healthier if you’re skinnier.”

“You can achieve perfect health on your own.”

“You’re a better mother if you do things naturally.”

As we continue to unmask how beauty standards are both racist and sexist, we can also see how they are ableist. Not all bodies are skinny! Not all bodies move in the same way! Not all bodies work as we’re told they should!

Fat phobia (the fear of being at a larger weight or clothing size) is deeply ableist and hurts women of all sizes. Women who struggle with eating disorders have a more difficult time recovering, women who are larger feel pressure to slim down in order to be taken seriously, and women who find themselves at our culture’s “ideal size” face immense pressure to stay that way — when, as women, our bodies are not meant to “stay” any way. We cycle and flow on purpose.

The “Need” for Healing

It is also important to recognize that the media functions in ableist ways regarding physically and cognitively disabled persons. More often than not, cognitively disabled characters in movies and television function in stereotypical and harmful ways. We call them “tropes”: common, clichéd narrative devices. Some tropes of cognitively disabled persons include being childlike, being frequently confused, pining after a romantic partner who will never return their affections because of their disability, being untrustworthy and having to prove their worthiness, being the subject of miracles or the impetus behind the protagonist’s personal growth, and (most frequently) being killed or sacrificing themselves after proving their worth in order to elicit emotion from the audience.

This is a reflection of “inspiration porn,” and it is deeply harmful, especially in media directed at children. Our kids need to know that people with disabilities are kind, trustworthy, and no one to be afraid of. We need to teach our loved ones that disabled people do not exist solely to inspire us and that disabled persons are just as worthy and capable of familial and romantic love as anyone else. We need to see disabled characters as heroes in their own right.

We also need to accept disabled persons regardless of whether or not their story includes healing of any kind. This acceptance can be difficult within church settings, where we often focus on healing narratives. Some priests might use stereotypes of healing in their homilies when expounding upon Gospel readings that feature Christ’s healing miracles, especially of the deaf and blind. We must be careful not to assume that all people experiencing disability desperately yearn for healing. Some do, but others don’t!

Disability and illness can be so challenging, both for the person experiencing it and for people who care for them. It can be painful, ostracizing, and confusing. But this should not mean that the end goal for all persons is perfect healing. It is neither realistic nor helpful to assume that a person’s existence should be oriented toward perfect healing, because there’s no such thing as perfect health in this life. Sickness, disability, and injury are a part of human life. Even if you are fortunate enough to have perfect health and live until a ripe old age, you will likely experience disabling conditions as a natural part of aging. What’s more, God is no less good and no less present in the life of a sick, injured, or disabled person if he or she never receives healing.

We also need to be careful about how we frame our discussions of Heaven. Some people in my extended family say things like, “I can’t wait to see what Matthew will be like in Heaven,” or “In Heaven, Matthew will be exactly as he should be.” Statements like these ones hurt, because they suggest that Matthew is some sort of mistake that God will work to rectify in this life and the next. We don’t know what Heaven will be like, nor do we know exactly what our bodies will be like when our souls are reunited with them. We do know that Jesus retained his wounds after his resurrection. We also know from Scripture (John 9:1-3) that disability is not a function of or punishment for sin (though some Christians still think so).

We should stop using disability as the go-to example of worldly suffering that will be rewarded with perfect healing, because doing so creates a narrative that we can somehow achieve or earn perfect health. But what happens when we don’t? We might feel we have failed, that our faith isn’t strong enough, or that God doesn’t love us.

Ableism and Our Own Bodies

The most insidious ableism is often the ableism with which we treat ourselves. Even as an able-bodied person with a disabled family member, I often catch myself being hard on myself when I’m not as productive, physically active, or alert as I think I should be. I catch myself saying, “If only you’d do X workout, take Y supplement, lose Z amount of weight, then you’d feel better and be a better person.”

Negative self-talk is often deeply ableist. When we expect ourselves to prove our worth through high levels of productivity, earn bodily autonomy through diet or exercise, or look like others in order to be accepted, we’re operating with the  assumption that one type of body is best — which suggests that all other bodies, whether yours or someone else’s, are bad. The first and best way we can fight ableism is by changing the narratives in our head around our own bodies. We are called to love our neighbors as ourselves. How can we love our disabled neighbors well and be anti-ableist if we perceive ourselves in an ableist way?

The first and best way we can fight ableism is by changing the narratives in our head around our own bodies.

Much of the work to combat ableism comes down to fully accepting bodies that won’t become the bodies we think of as “normal,” “healthy,” and “beautiful.” One way of doing so is offering a prayer that sounds like, “Lord, help me see that all bodies are good, exactly as they are.”

Self-hatred can run deep, as can grief around ourselves or our loved ones’ being disabled. Accepting all bodies as good can begin with working to think neutrally about our own bodies by not passing judgment on them. It means starting from “I am” or “It is” and moving to “I am good” or “It is good.” It means simply thinking, “This is how it looks and feels to be in this particular body. This is my body.”

I am.

I am.

This is my body.

This is my body.

It is good.

It is good.

Read Part 1 of the Disability and Catholic Feminism Series on FemCatholic HERE

*When I originally wrote this series, FemCatholic was a free publication. As of October 2021, FemCatholic is now behind a paywall. In the spirit of access, I believe it is important for my writing to remain free-to-read. FemCatholic is an incredible space, and I am thrilled every time I have the chance to write for them! If you have the means to do so, I encourage you to subscribe to one of their passes ($5-$10/month.) Their collection of writers, videos, and events are creating much-needed space for Catholic women to come as they are. However, all of my writing for FemCatholic will always be free to read here on TheologyForEveryBody.com

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Disability & Catholic Feminism: Including Disability in Our Vocabulary

As Catholics, we are called to build community with and advocate for the marginalized. There are several populations of people who may come to mind when we think of those who are marginalized: BIPOC communities (Black, Indigenous, and People of Color), women, the poor, the sick, the homeless, LGBT persons, the imprisoned, the immigrant. Catholic social teaching and Scripture outline how we ought to build community with persons from these populations.

This teaching is part of what helps us understand how someone can be both Catholic and feminist: Working toward just treatment for all people necessitates doing so for women. It is important to remember that women’s collective experiences are not homogenous, which motivates our advocacy for intersectional feminism. Our work toward just treatment for all persons ought to reflect this diversity within feminine experiences. Women from every marginalized group not only deserve a seat at the table, but they also should be the leaders we look to in order to fully understand the diverse challenges that women face.

One group of people that we often neglect in discussions of marginalization and inequality are people with disabilities. If we are to achieve truly intersectional feminism, we must include women with disabilities and women who care for people with disabilities. Over the coming months, we will dive into a series that addresses how disability advocacy is both Catholic and feminist. We will begin with vocabulary: common terms and pitfalls.

Words for Disability

Why do I and other disability writers spend so much time clarifying terms? Because words are powerful! They can hurt people or make them feel loved and seen. It is important to use words thoughtfully and intentionally, especially in a society where it is so easy to broadcast and weaponize them.

As with any other topic, there are varying opinions about how we ought to discuss disability. For example, some don’t like the word “disabled” because it suggests a negative orientation toward living and ability (“You are dis-abled.”). They might use the phrase “differently-abled” instead. While this latter phrase is well-intentioned, it can also suggest that we’re all differently-abled and, therefore, that we all experience similar limitations when it comes to our differences — which is simply not true.

Some people prefer to use person-centered language, such as “person with a disability” or “person experiencing disability” rather than “disabled person” in order to emphasize humanity, rather than the characteristics that qualify humanity. A person’s level of need or ability does not constitute their whole identity! Person-centered language also allows for the possibility of these experiences being temporary; after all, a person may not always be homeless, disabled, or sick. That being said, some disabled persons do view their disability as an expression of part of their identity and prefer “disabled person.”

The most important thing is that you are engaging in conversation with the disabled person directly! It is always better to speak toward the person in question, even if a caregiver, accompanier, or family member is present. Doing so shows that you acknowledge the individuality and dignity of the person, even if it does not appear that he or she is verbal or conventionally communicative. Corrections and preferences are much more likely to be given in kind, with no offense taken, if you start from a place of respect.

Several words used to be common when describing people with disabilities but are less so today. Words or phrases such as “handicapped,” “impaired,”  “crippled,” and “special needs” have fallen out of popular use for a variety of reasons. The first three words call to mind physical disabilities and were popularized after the Vietnam War, when there was a surge of physically disabled post-war veterans. While some people still feel comfortable using them, others may consider them to be insulting. “Special needs” often refers to people with cognitive disabilities; some now see this phrase as infantilizing, while others are comfortable using it. For example, when I talk about my own brother, Matthew, who has two genetic disabilities, I sometimes use “special needs” when speaking with people who are unfamiliar with disability, because it can help them understand that his disabilities are not solely physical in nature.

The language we use to discuss disability most often depends on the preferences of the individuals who live with disability. As we can see, there is some room for different, well-intentioned decisions about the vocabulary we use. However, there is one word we should never use, whether or not we’re describing a person with a disability: “retard.” Our refusal or decision to use this word is, frankly, a matter of respecting human dignity.

The word “retard” was used to describe people with intellectual disabilities in the early 1900s. It has since become used colloquially to mean “stupid,” “unfair,” “slow,” “ridiculous,” “upsetting,” and so on. This term is no longer used in medical settings, because we have a fuller understanding of what cognitive disability is; it isn’t just being “slow” (which is what “retard” means in French). Unfortunately, some still use this word as slang. One simple way to be a disability advocate is to lovingly correct friends and family who use this word and remind them that it is offensive, because it equates being disabled with being the terms listed above.

Personally, I use “disabled persons” and “person with a disability” interchangeably. I prefer “persons” over “people” for the same reason the Church often uses “persons” in her documents: It highlights individual, personal dignity over the homogenous notion of “people.”

Disability and The Word

As Catholics, we believe that the most powerful words are the Word of God: Scripture. As such, our engagement with Scripture ought to shape how we perceive and treat members of marginalized communities. In the Gospels, we see Jesus heal people experiencing a variety of disabilities: blindness (Mark 8:22-26), deafness (Mark 7:31-37), hemorrhaging (Matthew 9:20-22), paralysis (Matthew 9:1-7), and more. This inclusion shows us that disability is not just a modern phenomenon, even if it is a modern term.

When we read the stories of Jesus’ healing miracles in Scripture, we should remember the people involved and accurately situate the stories within their historical context. During Jesus’ time, people with disabilities were viewed as “unclean” and were, therefore, shunned by society. Others could not touch or dine with them, and they were not welcome at religious services. Keeping this context in mind, we can see that Jesus’ engagement with persons with disabilities was a radical upheaval of social norms.

Aside from healing their physical ailments, Jesus’ interaction with these persons — especially given His use of physical touch — is, itself, a form of healing. Jesus healed the aching wounds of an excluded person. It is also this relationship and His love that heal them.

Both forms of healing are important and, in fact, parallel the two foremost models of disability as understood in secular disability study: the medical model and the social model. The medical model defines disability as a primarily medical phenomenon. It says that disability is something that can be scientifically understood and, therefore, that solutions to the challenges of disability are medical in nature. The social model understands disability as a primarily social phenomenon. It asserts that the challenges of disability are the limitations in access, political protections, and community, and so the solution is to increase access, protections, and opportunities for genuine connection with others.

In the early 1900s, disability was largely viewed through the medical lens. With the rise of disability advocacy on behalf of physically disabled veterans after the Vietnam War, disability came to be seen through a more social lens. Today, disability scholars largely agree that disability is a combination of both the medical and the social models. It shouldn’t surprise us that Jesus Christ, the Son of God, provided us with a model that integrates both, long before explicit disability advocacy existed.

One of the most important passages in Scripture regarding disability is found in the Gospel of John. Jesus comes upon a man who was born blind. His disciples ask Him, “Who sinned, this man or his parents, that he was born blind?” Christ responds, “Neither he nor his parents sinned; it is so that the works of God might be made visible through him” (John 9:1-3). This passage demonstrates that disability is not a result of sin. Furthermore, it positions disabled persons as conduits of God’s goodness and power.

Not all interpretations of this passage are helpful, however. Some people without disabilities interpret this passage as meaning that the purpose of disability is to make others feel close to God. This interpretation can lead people to think that the reason for the existence of disabled persons is to “be inspiring.” But people do not exist to make us feel a certain way. Disability does not exist simply to teach those who don’t have a disability. We must remember that disabled persons are whole, unique persons with aspirations for their own lives.

Words Online

The notion that disability exists to inspire is described by a term you might see when involved in disability advocacy: “inspiration porn.” The phrase draws a parallel between the way pornography seeks ot make us feel good and how we’re made to feel when watching a video or applying a meaning to a person’s life or actions that we are not participating in. Simply put, the phrase “inspiration porn” highlights how videos and other media can exploit others, even if unintentionally. I personally use the term “inspirationalizing” instead of “inspiration porn,” but I mean the same thing: We don’t know the people in the video. We aren’t those people. We have never been in their particular situation. Using their life or experience for our own purpose offends their dignity, because it reduces them to how they make us feel.

For example: Have you ever seen or even shared a viral video on Facebook of a teen with autism being asked by his classmate to prom? Or of a baby with Down syndrome giggling, accompanied by a caption saying that abortion snuffs out the joy of seeing that smile? While these videos make us feel good and do work against the exclusion of people with disabilities, they can support the idea that the core of a person’s worth is the joy they bring others. We should never base a person’s right to love, life, and acceptance on the way they make us feel. Furthermore, these types of videos and photographs are often used to propagate political messages and can treat a human person as a prop.

Using Words Thoughtfully

I have three suggestions for how we, as Catholic feminists, can begin including persons with disabilities in our advocacy:

  • When sharing a story or video, make sure the featured disabled person consented to its sharing.
  • Work in our own lives to engage with disabled persons and teach our children about disability.
  • Use language that emphasizes human dignity, rather than a political or inspirational message.

God’s examples of healing in Scripture can invite us to understand the lived, real experiences of disabled persons in our own community.

Suggestions for Further Reading

If you want to learn more about language, Scripture, and the history of disability advocacy, I recommend A Healing Homiletic by Kathy Black and Copious Hosting by Jennie Weiss Block.

Read Part 2 of the Disability & Catholic Feminism Series on FemCatholic HERE

*When I originally wrote this series, FemCatholic was a free publication. As of October 2021, FemCatholic is now behind a paywall. In the spirit of access, I believe it is important for my writing to remain free-to-read. FemCatholic is an incredible space, and I am thrilled every time I have the chance to write for them! If you have the means to do so, I encourage you to subscribe to one of their passes ($5-$10/month.) Their collection of writers, videos, and events are creating much-needed space for Catholic women to come as they are. However, all of my writing for FemCatholic will always be free to read here on TheologyForEveryBody.com

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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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Categories
health PCOS

Supplements and Supports

So I’ve nearly bled to death. I’ve gotten on (and then off) the birth control pill. My period is gone and my gut is wrecked. What does past-Madison do next?

In this final installment of my PCOS series I am going to try and do two things:

  1. Walk you through what I’ve tried
  2. Repeat, over and over again, that I am not a doctor

Because two things can be true:

I almost exclusively came to the understanding of my potential health diagnoses through independent research, online resources, and trial and error.

And it is important to seek the insight of medical professionals anytime it is accessible for you to do so.

In the now-three years immediately following the complete collapse of my sense of health, I did not have access to my primary care physician, and my health insurance plan required her referral to see any specialists. It wasn’t until I finally saw a young, female doctor through the student health services at my graduate school that a medical professional confirmed for me, in-person, that I probably have PCOS and can get a period with proper non-birth-control mediation. But when we left off, I was sure that I had Post-Birth Control Syndrome (PBCS) and my period hadn’t come back. How did I get from that to a different but similar acronym?

In my prior post I talked about Dr. Jolene Brighten, whose website and resources popped up as I manically Googled “I just got off birth control and my body is destroyed.” After reading a bunch of her articles and participating in her free online conference on hormonal health, I paid for access to her “Birth Control Hormone Reset” course (it was $150 at the time.)

In this course, I was taught the ins and outs of my hormones and their cycling, and I was instructed to try a number of things. Some of them worked. Some of them might have worked. Some of them definitely did NOT work. That’s how I’ll organize them:

PBCS things that DEFINITELY worked:

  • Eating a whole food (or “paleo”) diet : For the first year I was off birth control and in Chicago, I ate as un-processed and un-packaged as I could. In part due to my neighborhood becoming a food desert one month into my residence, I began using Imperfect Produce* and designing my meals around veggies and fruits. I did not do this exclusively: I still ate pasta, rice, canned veggies, and fast food. I still ate at restaurants and had a cup of noodles when the school day ran me to the ground. I made cookies and brownies, and finally got in the habit of eating breakfast via Cheerios and instant oatmeal. Most important was that I tried AND that I did not count calories or restrict myself in any capacity. I just ordered fruit and veggies and knew I had to use them before they went bad. It’s still the most consistent cooking I’ve ever done in my life, and it drastically changed how I felt in my body, for the better. I will also say it loud-ish and proud-ish: I don’t eat this way anymore. I have far less time to cook, and I found in the middle of my shift from PBCS to PCOS diagnosis, I began to feel very self-conscious about my weight. I actively dieted for two months, watching my caloric and nutritional intake, and to nobody’s surprise felt so much worse about myself. So I stopped. And I’ve been letting myself eat whatever sounds good since, because COVID. The last thing your body needs during an excruciatingly stressful time is to count calories. Sure, I’ve swung the opposite direction now, back to not getting enough fruits and veggies. But I’m getting back on the horse! (* This link is my referral link. If you use it to sign up, you get $80 in the form of $20 off 4 consecutive boxes. And I get $30 off my next box. Just call me a veggie influencer I guess.)
  • Cutting back on dairy: I grew up in a house where we had at least one if not more glasses of 1-2% dairy milk with dinner every night, so I’m LOVING the “got milk?” memes about the hold the dairy industry had on our generation. The rise in alternative milks has been life-saving for someone with a sensitive stomach, constipation, hormone issues, and terrible acne. Cutting back on dairy is the #1 thing that has revolutionized my skin and made my stomach far less nauseous and irritated. For those who are curious about the most eco-and-hormone-friendly alternative milk options? Oat milk and flax milk. Oat milk is now so widely accessible it’s surpassed almond milk in popularity. Flax milk’s taste is hit or miss, so I go with oat 100% of the time.
  • Eating MORE: People with hormonal imbalances often gain weight uncontrollably. With the hold diet culture has on us, it should come as no surprise that many women under-eat in response. Under-eating increases insulin sensitivity, increase stress hormones, and increase fat production as your body produces and stores what it needs to survive. Eat when you are hungry.
  • Pelvic floor exercises (and peeing more regularly): As is the case with many women who undergo any type of hormone supplementation, my pelvic muscles and bladder control dramatically decreased during my time on the birth control pill. Once, I had to walk home four blocks from a bar where I’d had 2 beers. In the 10 minutes between the bar and my apartment, without even a full bladder, I couldn’t hold my urine. In the hallway out front my door, I completely wet myself (and then had to explain it through embarrassed tears to my roommate.) I share this because it’s not talked about, even though it still brings up feelings of shame. Incontinence happens, and is tied up in our hormones. There is not much you can do about it beyond pelvic muscle exercises, and going to the bathroom as frequently as you need to avoid urgency.
  • Getting more sleep: This was hard in a cockroach-infested apartment in a city. But I tried to set aside 8-10 hours every night for sleep. I needed it. And I stuck to it. (Except for on paper-writing or exam nights…) Your body needs to rest to heal. Period. I know it’s not realistic for everyone, especially for mothers with small children, but I can’t stress enough how constantly fatigued I was after my digestive illness. I couldn’t heal without sleep.
  • Drinking more water: Grad school and illness finally did it to me. I FINALLY got — and actually USED — a water bottle. It’s amazing how quickly you can go from feeling like you’re dying to remembering that life is worth living by drinking a glass of water.

PBCS things that MAYBE worked? (Maybe it’s the placebo effect?)

  • Collagen Powder: I began taking Vital Proteins, mixing it into baked goods and beverages, because I won a giant container in an Instagram giveaway. That’s the truth. But as I looked into it, I found some feedback that suggested not only that it was good for skin, nails, and hair, but that collagen is crucial to a healthy stomach and colon lining. I will say, I experienced far fewer pinching and burning feelings that had previously accompanied my mild ulcerative colitis. But who knows: It could also be attributed to the other things I did. Collagen powder is still a great way to incorporate protein into your diet, regardless.
  • Drinking tea: I began drinking a cup of tea every morning and every evening. A number of herbal teas had been recommended to me during my illnesses (ginger, green, peppermint, hibiscus, raspberry leaf, and dandelion root being the key players.) With my sensitive stomach lining, I began avoiding peppermint because it’s an irritant. The others I alternated. The most helpful for me seemed to be ginger (I bought THIS probiotic kind from Celestial Seasonings) and green. Word to the wise: Green tea makes me bloated and burp-y. Not sure why. But I did find my stomach soothed and repaired after making tea a habit. Maybe it’s nothing more than drinking more water, but it can’t hurt!
  • Supplements: I’ve tried so many, with mixed and unclear results. If my general trajectory indicates their success, I’d say give them a try. But I cannot trace any particular result to any particular supplement.
    • Dr. Brighten’s Balance: This is the supplement I’ve taken most consistently. I didn’t notice any significant changes until I started my prescription to induce a period (we’ll discuss momentarily.) I find my PMS, headache, muscle ache, and cramping symptoms associated with my cycle are far less brutal taking this supplement.
    • Dr. Brighten’s Adrenal Support: I took this for about a year, to combat constant feelings of tired-upon-waking. It seems to have helped.
    • Dr. Brighten’s Adrenal Calm: I take it like melatonin in the evenings if I’m wired, traveling, or haven’t been sleeping well.
    • Whole food multivitamin: Certainly helped me fill some gaps in my diet, but I found them very difficult to digest. If I didn’t eat a large meal with each pill, I would experience severe stomach pain and bloating.
    • N-Acetyl Cysteine: Amino acid that is supposed to aid in production and absorption of glutathione, a key player in the balancing of hormones. Who knows if it’s doing anything.
    • Vitex: Also known as chaste tree, vitex is meant to help cycle progesterone. Since it’s found in Dr. Brighten’s Balance blend, I don’t take it unless I run out of Balance.
    • Spore-form probiotic: This is the kind of probiotic Dr. Brighten and others recommend, especially for those with leaky gut or other digestive issues. Probiotics in spore form have a better chance of surviving the journey to the center of the gut. I didn’t notice any difference in success compared to a regular probiotic.
  • Castor Oil Packs: A number of online hormone healers recommend taking up the practice of castor oil packs for liver and gallbladder soothing as well as pelvic detoxification. You soak a flannel or cotton rag in castor oil, place it directly on your skin, and then put a hot water bottle on top of that. I think any and all positive benefits I experienced could just be attributed to the benefits of a soothing hot water bottle. Who knows if the castor oil is anything more than a woo woo fluke. But I tried it! And it seemed to help in the midst of gallbladder spams and abdominal cramps.
  • Yoga (and otherwise not working out): I have always loved yoga. I pop into the classes my mom takes every time I go home. I made good use of the free yoga classes for students during grad school. I sometimes did self-directed yoga at home or in the park. I feel strong and soft and peaceful when I do yoga. I can only imagine this helped. Otherwise, working out really stresses me. I don’t find it fun. Doing high intensity workouts increase stress hormones and the soreness and inflammation of the muscles can be difficult for me to navigate on top of digestive and reproductive pain. So besides yoga, I didn’t do any other physical activity.
  • Kombucha (and other fermented things!): Dr. Brighten suggested fermented foods to aid in digestion and repopulate your stomach microbiome, which is often depleted from consistent birth control usage. I had never tried kombucha before trying her protocol, but I fell in love with it. Unfortunately, they stopped making my favorite kind and I’ve since given up the habit (@ Health Ade: Bring back your Original flavor. Please and thank you.) But I still snack on pickled ginger that I request in bulk from my local sushi place.

PBCS things that did NOT work:

  • Cutting out coffee: Lots of people online, especially those with anxiety, suggest cutting out coffee to reduce the production of cortisol, our stress hormone. I’ll admit it: Coffee can make me feel jittery and anxious. Especially if I have it on an empty stomach. But I cut out coffee entirely for three months during this protocol and did not experience a single bit of a decrease to my anxiety. I didn’t experience a natural boost in energy after the withdrawal symptoms subsided. I didn’t experience any increase in mood. When I brought coffee back, I didn’t experience any symptoms either. It seems coffee doesn’t do all that much to me, so long as I eat. And I enjoy the taste so much, I’m keeping it around!
  • Prebiotics: With the gut dysbiosis that comes from being on birth control, everyone and their mother suggests a probiotic. That, I can do. But so may probiotics now come with PREbiotics, which are meant to feed the probiotics to keep them alive and well in the journey to the center of the gut. Every prebiotic I’ve ever taken has made me so bloated and uncomfortable, it just isn’t worth it. I’ll stick to my pickled ginger, thanks.
  • Seed Cycling: The woo woo spouse to castor oil packs is seed cycling. During the first half of your cycle, you crush and eat two specific kinds of seeds. During the back half of your cycle, you crush and eat another two types of seeds. The nutrients in these seeds are meant to mimic the release and rise of the various female hormones. I tried it for three months and felt so silly, and felt so little of a difference other than increased stress having to figure out how to incorporate sesame seeds into my every day for two weeks straight, it just didn’t seem worth it. Maybe it works, but it’s too much prep for me.
  • Dr. Brighten’s food protocol: It’s important to consider the ways that, had I not been in dialogue with gastrointestinal medical professionals the year prior, I might not have recognized the risks of following her protocol to a T. Her dietary protocol is devoid of processed carbs and dairy and heavy on fat and cruciferous vegetables. This is, in part, because these foods are high in nutrients your body is naturally depleted from due to the birth control pill. However, these are exactly the same foods that populate my “gallbladder no-go list”: They are extremely difficult to digest. Ultimately, I couldn’t follow her meal plan without posing myself some serious risks. I also found that participating in her online Facebook group form was not helpful for me: None of the women could relate to these health risks posed by the diet. And when I proffered my difficulties, the moderators had little more to say than, “just stick with it!”

I’ve written for The Young Catholic Woman an article on online influencer courses and the dangers of investing time and money into someone who doesn’t personally know you. I can confirm that Dr. Brighten’s protocols were an absolutely pivotal catapult into the world of menstrual and hormonal health. Absolutely irreplaceable. But my feelings might have been different if I didn’t have the insight of other medical professionals also in my back pocket. All this to say: Please be careful. “Doing your own research” doesn’t mean “stop looking after the first aesthetically pleasing doctor with an online presence.” It means looking into numerous opinions. And remember that these thoughts in these lists are my own, personal experience. I AM NOT A DOCTOR.

One of the people Dr. Brighten herself directs her clients to for additional insight is Dr. Lara Briden, author of the Period Repair Manual. I read this book cover to cover and began to compare what I was reading there with what I had read from Dr. Brighten. It became clear to me that, what with my period not coming back after a year of following Dr. Brighten’s protocols, something else might be awry. One year is definitely enough time to cleanse your body of artificial hormones and restore depleted nutrients. It began to seem like my hormones were cycling, but I wasn’t ovulating. This led me to begin researching PCOS. The symptoms Dr. Briden included in her book’s examination into Poly-Cystic Ovarian Syndrome (PCOS) were compelling. Many of the symptoms of PCOS and PBCS are similar, but there are a couple of key differences. The biggest two? Insulin resistance and uncontrollable weight gain.

Since coming off of the birth control pill, I had not experienced any weight loss, despite having gained it so suddenly and immediately upon starting the pill. I was eating healthy and getting good sleep. But the weight kept piling on. Additionally, I was noticing that my sensitivity to sugar (which I briefly discussed in the Birth Control installment) was getting worse. My stomach was immediately upset after eating sugar. I would get fatigued and bloated, with brain fog to boot. I was also showing symptoms of male-pattern hair growth. So, at the same time that I was exploring Dr. Briden’s PCOS information, I began to see a doctor through school.

This was the doctor that finally ordered my first ever blood work for a comprehensive hormone panel. The results came back “normal” across the board, except for a slight spike in testosterone. Heightened testosterone can be a sign of PCOS. This is how we’ve landed on this “probably” diagnosis.

In response to this “probably,” and having a year and some change between actively trying to treat PBCS and feeling better, I began incorporating some new things unique to PCOS treatment:

PCOS things that DEFINITELY worked:

  • 10-Day Progesterone prescription: THIS is how I’ve gotten my period back. And while it’s not a “natural” period, it is my body naturally cycling in response to an appropriate, bioidentical hormone increase. I can ovulate while on this prescription (though it’s unclear if I am), and my periods are a normal length, consistency, and amount. I start taking each 10-day cycle on day 21 of my cycle so by day 31 I start bleeding. Periods occur in response to heightened progesterone after the collapse of a follicle. This medication mirrors that process.
  • Period cup: This and period underwear I began using moreso in effort to go as low-waste as possible across my lifestyle, but I HAVE to include them both because they’ve absolutely revolutionized my cycle for so many other reasons. When it comes to the period cup, it’s namely that having it in reduces my cramps, significantly. What’s more (and to get real with you) as a person with profound gastrointestinal issues, the period cup helps reduce bowel movement discomfort. Have you ever had the experience of wiping and your tampon string gets yanked? It’s truly awful. No such issue with a period cup. Period cups ARE however notoriously difficult to insert and remove. Here are my tips for discerning cup life:
    • If you’ve never liked tampons, period cups are probably not for you.
    • I do the “tulip” or “pinch down fold” pictured HERE. I have a tilted cervix and find this is the only way I can get it up in there. That link will also provide details for other methods of insertion and removal.
    • The period cup popping open inside you is an odd experience. Not painful, but sudden. You’ll know if it’s open.
    • I highly recommend buying the Dot Cup. It comes with a pouch, and they often run sales. In fact, during COVID they gave away hundreds for free. That’s how I got mine.
    • There’s not good way to remove a period cup in a public restroom with more than one stall. Your hands do get bloody.
    • Because period cups are made from antibacterial plastic, your chances of experiencing toxic shock syndrome are significantly reduced. Meaning, you can wear them for a significantly longer amount of time than a tampon before emptying it.
    • The first time I used it I wept because I thought I got it stuck inside me and Guy had to talk me down through the bathroom door. We laugh about it now. Don’t read the horror stories on the internet.
  • Period underwear: If you’ll recall from my Bleeding To Death installment, I am used to having to change a pad every hour. I was very resistant to period underwear for that very reason: You can’t change out a pad without changing your whole underwear, and then where do you put the used pair? They’re also typically very expensive. But I don’t trust just a tampon or cup without backup, I really wanted to reduce my waste, and I’d heard such amazing stories about period underwear decreasing period anxiety, particularly during sleep. I finally bit the bullet during Thinx’s major annual sale and it changed. my. life. It’s everything I hoped it would be. Comfortable. Doesn’t feel like you’re wearing a diaper. It really IS moisture wicking (so you don’t FEEL like you’re sitting in blood.) I sleep so much better on my period. But I DO have some pro tips:
    • BUY THE TARGET BRAND: Thinx recently partnered with Target to do a discounted line of period underwear. But here’s the deal: It’s the exact. same. product. In fact, the “changes” actually make the product BETTER. Thinx’s original line of period products are not cotton and they’re twice as expensive. Everyone and their mom knows that you should be in cotton underwear, especially when you’re on your period, and especially especially if you’re prone to UTIs. Cotton is moisture-wicking, antimicrobial, and breathable. Thinx’s Target line? All cotton. And half the price. I see absolutely zero reason why you should be buying the original line.
    • Buy the HIGHEST absorbency: They all feel the same, no matter how absorbing they are. There is no difference in thin-ness or comfort, and there’s no difference in price. So do yourself a favor and just buy the ultra absorbent pair because…
    • You can’t tell how much you’ve bled: The entire interior of the underwear is black. Which make sense, but also makes it extremely difficult to tell if you’re leaking. The only problems with leaks I’ve ever had have been in “Level 2” absorbency rather than ultra OR leaking around the edges of the “pad” after lying down. Still far fewer leaks than conventional pads.
    • Hand-rinse them in warm water before putting them in the laundry: Maybe I’m just paranoid, but better to be safe than sorry. This prevents blood from getting in the rest of your laundry, and extra-prevents the growth of bacteria.
  • Eating more protein: This is hard with a broken gallbladder. I can’t eat pork, I can hardly eat beef, and I avoid dairy as much as possible. But I’ve found that when protein is an intentional part of each of my meals, I feel significantly better. I have less fatigue and more energy throughout the day. I naturally eat less because I’m fuller longer. My proteins of choice are eggs, string cheese, peanut butter, Greek yogurt with added protein, chicken, beans, and tofu.
  • Fertility tracking: Even before I got OFF birth control, I began tracking my cyclical symptoms using FEMM fertility tracker. It’s the most intuitive and comprehensive app I’ve found, and it’s completely free. You have access to trained FEMM educators at any time as well, if you have questions. It has options for Creighton, Marquette, and other methods to input respective data. FEMM is also committed to providing comprehensive reproductive health education to young girls. I’ve learned so much about my body through this app, and throughout my PBCS and PCOS diagnoses, it’s been helpful to note what is and is not happening.
  • Strength training: In the last two months, I’ve begun boxing again. I do it once a week and I pace myself, but nothing makes me feel as good and strong and beautiful and healthy in my body as boxing. I am THRILLED to be back. What’s more, I’ve noticed a steady decline in fat on my body and increased muscle. It’s not about weight (I weigh the same, actually.) It’s about the strength of my body and recognizing it as “me” when I look in the mirror.
  • Massage: I am a very, very lucky person. My fiancé is not averse to giving me foot massages. I’ve found that physical touch has been a grounding, key aspect of my healing (to which the pandemic has posed a distinct challenge.) Being held in a variety of ways has brought me back into my body when it has not otherwise felt like mine. Whether caring touch comes from a loved one or a trained professional, regular massage has been a gift from God.

PCOS things that MAYBE worked? (Maybe it’s still the placebo effect?)

  • Ovasitol: This is the #1 recommended supplement for PCOS. Inositols have shown in a variety of studies to work similarly to Metformin with fewer side effects, helping improve egg quality and combat insulin resistance. I used it once daily for a year. I certainly noticed less of a sensitivity to sugar, but my period never came back naturally, so it’s uncertain how much credit I can give it.
  • Seeing a chiropractor: Well into working from home from my desk, I began to experience debilitating pain in my mid-back and hips. I went to a chiropractor–paying out of pocket, because I still didn’t have access to a primary care doctor–and found that while it helped treat my immediate joint and muscle pain and answered to some long-running challenges in my shoulders and hips, it also exacerbated shoulder tension and mental stress if I wasn’t going regularly (which I could not afford to do.) I am now going once a month and that feels helpful, but I’m uncertain if I can call it a net-win outside of acute treatment.
  • CBD: Lots of people who know I have anxiety have shared their miraculous stories of taking CBD and recommended it to me. It seems to be a wonder supplement: Decreased anxiety, decreased inflammation, decreased pain, increased focus, better sleep. I’ve been using Equilibria for about 4 months and despite loving their brand, their customer service, and their commitment to quality, I’ve discovered that CBD only minorly works for me: It reduces anxiety, but it increases my focus so much it actually impedes my sleep, and I haven’t noticed any improvement in my pain.

PCOS things that did NOT work:

  • Going gluten-free: Lots of PCOS gurus online suggest cutting out gluten for PCOS. Here’s the truth: Only people with sensitivity to gluten will see any sort of result from cutting it out. I do not have any sort of gluten sensitivity. Cutting it out, even for just a week, made me irritable and stressed. Like cutting out coffee, maybe it will work for you? It did not work for me.
  • Going back on birth control: It’s the #1 thing doctors tell people with PCOS to do, and its the #1 thing I will NOT do. Birth control got me into this mess, and it doesn’t actually do anything to treat what’s causing it. It just stops a person from ovulating, decreasing the likelihood that cysts will grow from post-ovulation follicles. Using birth control can do a lot of things (manage pain is one of them!) But it cannot balance your hormones.

The only thing left to do to turn this “probably” diagnosis into a “definitely” would be to examine my ovaries for cysts via pelvic ultrasound. If you’ll recall, I had one of those done before after I nearly bled to death, but it came back “inconclusive.” I haven’t had one since and, unfortunately, still haven’t had one. Ultrasounds are not a procedure covered by student health services. Until I have my own health insurance, off of my parents’ plan and onto one accepted in Illinois wherein I can also get a new primary care physician, I can’t access that exam unless I go to the ER.

So it’s here that I want to talk briefly about healthcare access and inequality.

I am a white, upper middle class white lady living in a neighborhood that houses one of the best medical facilities in the state of Illinois. But because of the drama and inaccessibility of the US healthcare system, I can’t access it for routine or acute care. My only option is Emergency Services and Urgent Care. I have incredible health care coverage through my parents’ military health insurance that I am fortunate, through the Affordable Care Act, to still qualify for until I turn 26 this September. But because this healthcare plan is an HMO, I cannot use this incredible health coverage unless I see and am then referred out by my family’s primary care physician….in California. I lose this healthcare in September on my birthday. My only hope is to receive healthcare through my employer (or Guy’s once we’re married…. a whole year later.) Guy’s job does not have corporate health coverage. He had to go through the marketplace, and then have a portion of it paid for indirectly by his boss. While still an immensely privileged opportunity, to still HAVE the marketplace option, the coverage options on the marketplace are…not great. All because the United States makes healthcare a reward for labor, rather than a right.

Now imagine all of that drama, for a person whose parents don’t have good coverage or coverage at all. For a person working a job that doesn’t offer any sort of healthcare. For a person who is unemployed.

Now imagine that this person is chronically ill or disabled, with dire, routine medical needs. With prescriptions they need to survive, at absolutely unjustifiable prices.

Now imagine that person is a person of color, or a member of the LGBTQ+ community (or both.) The very few opportunities for care FINALLY available to them very well might be tinged with disrespect. The care they receive might not be care at all. It might be imbued with racism and personal prejudice. It might be actively violent towards them. It might put them MORE at risk.

Imagine that person has kids.

And then remember: We are penalized by our government for NOT having medical care come tax season!

This. System. Is. Nuts.

It makes health a reward for working, and the more work you do the more of your body you are allowed to possess. What’s more, it disproportionately rewards those positions occupied by persons who came to the job with the help of inordinate privilege.

Health should not be a reward for work. You should not have to work to deserve health. To think this is the case is deeply ableist. It views people as only worthy to the extent of what they can do and produce.

This is, additionally, why it is so important to divest from religious models that encourage “praying pain away” and the like.

I write more about it for The Young Catholic Woman HERE. But I’ll briefly say more now: I prayed for healing, for years. I prayed that God would take my excruciating H. Pylori pain away. I prayed God would stop my bleeding. I prayed God would stop me from gaining more birth control weight. I prayed God would bring my period back. I prayed for my anxiety to go away. I prayed to be able to eat beef. I prayed for an end to hormonal acne. I’ve prayed for it all.

God did not enact any physical healing miracles in my life.

For a good long while, I was pissed. I thought God was entirely absent. I thought I “deserved” this pain for making choices I thought were in my best interest and maybe weren’t? I thought God wasn’t real. If He were, He would hear my prayers and answer me.

So many Christians feel this way. And it is wholly, completely untrue.

In fact, it’s ableist of us to think it IS true.

What’s more: God does not will suffering. God is not punishing you by making you sick. Disability and chronic illness and mental illness or not symptoms of sin. (He tells us so, right in the Gospel of John, Chapter 9.) They are natural functions of the body that everyone experiences, at some point in their life.

Again: We cannot and should not have to earn our health, just as we cannot earn our holiness. We think we can, especially as we’re inundated with stories about sainthood. We think these people earned their sainthood through their lives of service and prayer. This is not the proper way to conceive of sainthood. The saints were people who received grace-filled gifts, and then did something with them. They didn’t do something and then earn grace-filled gifts.

Catholics are especially guilty of this mindset, with our emphasis on practices, rote prayers, and sacramental milestones. We think that if we check all the boxes, God MUST respond in x, y, z ways. (I talk about this in the context of dating and marriage in THIS article.)

We can also approach the earning of health from a totally secular path that leads us to the same place. We are equally inundated with influencer advertisement for practices, supplements, workout regimens, etc. To a certain extent, this post is guilty of doing just that! We can believe that if we do all of these things, we DESERVE good health as the result and we WILL achieve it.

This is also not true. I tried every single one of those things listed under PBCS resources. Not ONE of them led me to getting my period back “naturally.” Sure, they made me feel better. They attended to other concerns I had. Not one led me to the ultimate outcome I was praying for.

Even if we do ALL the things, we might NEVER be healed. Neither by our own hand or by Gods. Healing is not earned. Physical health is not a right. It is an immense, immense privilege.

This doesn’t mean stop praying. It also doesn’t mean stop seeking medical attention. To quote my man Hans Urs von Balthasar: It means we “reasonably hope” for healing.

We can pray for our healing to end, offering it up as a form of prayer in and of itself, and reasonably hope that healing comes, with the full knowledge that if it doesn’t, it is not a reflection of our goodness. We can reasonably hope the supplements work, with the full knowledge that if they don’t, we are not to blame. We can hope from a place of true humility in one hand. And we can rage about how much this f*cking HURTS in the other. Both are very good. God holds space for both.

As of today, June 25th, 2021, I have had one major update: During this last cycle, I spotted on my 15th day. Ovulation typically takes place half-way through one’s cycle, around day 15. While this is not a surefire way of indicated that I’ve ovulated, given that this used to occur long before my birth control experience, I’m taking it as a good sign. However, this doesn’t rule out the likelihood that I have ovarian cysts. If I am in fact ovulating again, bleeding while I do very well might indicate some sort of obstruction or growth that is impacting the process. There is a real part of me that actively fears ovarian cancer. What I need is a pelvic ultrasound.

I’m hoping and praying that August 1st comes quickly, so I can shift onto workplace medical care and see a specialist as soon as possible. Until then, I’m going to keep doing what works, keep filtering out what doesn’t, and keep sharing in some form or another this series of unfortunate menstrual events. It’s only by sharing our experiences that they can become normalized. I’m grateful you’ve taken the time to listen to mine.

With love — Madison

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Categories
health

Disability & Star Wars

Yesterday was Star Wars day (and also my father’s birthday. Happy Birthday, Dadison!) Along with May the Fourth came the premier episode of the new animated series The Bad Batch. Outside of the fact that I misread the title every time, I gave the series next to no attention before yesterday. Then, I saw an announcement poster, and was immediately amazed. I scrambled to Disney+ to watch the first episode right away:

The Bad Batch is about disability.

It isn’t even veiled. The name “The Bad Batch” is meant to allude to the general bad-assery of this troop of renegade clone troopers, but is most directly referring to the fact that these clones are “genetically defective.”

For those less familiar with the Star Wars universe–or perhaps you, like my Dad, often joke that the last time you saw a Star Wars movie was when the original premiered in theaters–let’s talk clones.

In the decades before the original trilogy, we generally follow the story of Anakin Skywalker, Luke Skywalker’s father who eventually becomes Darth Vader.

Do I even NEED to say *SPOILER ALERT* for that one?? For what it’s worth, this piece will be riddled with small Bad Batch and Clone Wars spoilers. But, only the first episode has been released as of me writing this, so I truly cannot spoil all too much.

During the time in which Anakin Skywalker is developing his Jedi skills, and struggling to navigate emotions he is told are ill-suited to the life of a Jedi, the Republic is locked in an ongoing war with a group of Separatists. The Republic consists of representatives from a variety of planets, with Emperor Sheev Palpatine at the helm. The Separatists consist of a variety of generally sketchy individuals, with a number of various sketchier “bosses” leading various charges, and with the exceedingly ugly Darth Sidious at the helm. The Republic is using an army of genetically cloned soldiers. The Separatists are using an army of droids. The Jedi fight as knights on behalf of the Republic. This is the period known as The Clone Wars.

Again, is it even a spoiler to remind us that Sidious and Palpatine are the same person? He’s footing the bill of both sides of The Clone Wars to destabilize the Republic, that he might more easily take control and establish a Galactic Empire in their wake. This is exactly what happens, and is exactly where The Bad Batch picks up.

The show’s protagonists are a group of genetically defective clones. Clones are meant to be genetically identical to the original clone candidate: Jango Fett. They all generally look alike, speak alike, and bear the same militaristic aptitude of Fett, if only generally differentiated by various colored uniforms and sick hairstyles. Except… not these clones, Clone Force 99, “The Bad Batch.” Each clone in Force 99 has some sort of physical or cognitive divergence from the original clone model.

Hunter: The leader. His only variation appears to be a marking that covers half of his face. It seems to be a tattoo of half a skull, the symbol of Clone Force 99, though it may be functioning to hide some sort of burn or birthmark.

Wrecker: The “gentle giant.” He is physically larger and appears to be blind in one eye, with a large spiderweb scar across the same side of his bald head. It is unclear if these physical differences were sustained from birth or whether they were the result of an injury. He is uncharacteristically strong and inclined towards physical brutality. He maintains some sort of cognitive disability. He is the Lennie to Hunter’s George (and the likeness to Of Mice and Men is clearly intentional: Wrecker’s most prized possession is a stuffed plush bunny named Lula. If you’ll recall, Steinbeck’s Lennie was led to imagine being on a bunny farm, as he was calmed down by the thought of stroking something small and soft.)

Crosshair: The sniper. He is significantly more gaunt than a standard clone, with a tattoo of a crosshair over his dominant eye. He is rigid, obedient, and cold.

Tech: The nerd. He is more gaunt than a typical clone as well, wears glasses, and functions as a sort of human C3PO for the group. It will be interesting to see whether, in future episodes, the narrative leans into the typical trope of “has lots of knowledge but misses major social clues,” often used in film to suggest an Autism Spectrum Disorder.

Echo: The “reg.” Echo is a cyborg clone. Having sustained a number of injuries in battle, Echo displays signs of albinism and is an amputee. He is called a “reg” because, unlike the other four, he was born a genetically normate clone. He has become disabled, rather than having been born that way. It would seem that his disabilities are relatively new, as the audience sees Echo deal begrudgingly with his limitations, apparently traumatized and sometimes embarrassed. Echo is important, and we’ll return to him very shortly.

So wait, are the clones (with Echo being the exception) of Clone Force 99 really disabled? Judging by the language used to describe them, it would certainly seem this way. They are described as genetically abnormal, and they maintain numerous physical differences that ostracize them from their “reg” peers and leave them struggling to engage according to normalized social cues.

However, returning to the double meaning of the show’s title, the other thing that distinguishes them from their peers is their effectiveness. They are outliers with a unique skill set, sent on unique missions and operating under a different set of rules, some externally imposed and others self-imposed. Their genetic differences give them exceptional utility despite social exclusion.

And that’s because they were designed that way.

Clone Force 99 were intentionally bred to be genetically abnormal. They didn’t happen to be disabled when they were born. They were genetically manipulated with an intentional, utilitarian outcome.

The stakes are raised when Admiral Tarkin arrives and observes the performance of Clone Force 99. He makes his opinions on clones very clear: The Empire no longer needs them, and in any case, they are by virtue of being clones, genetically inferior to other humans. “Reg” clones have all been “programmed” to some degree with decreased decision-making, to enhance their ability to follow orders. However, Clone Force 99’s unique skill set and supposed immunity from the cognitive programming strikes Tarkin as unexpectedly useful in their divergence from traditional clone tactics. Tarkin inquires whether or not these sorts of intentional genetic manipulations can be replicated, but with order-following forcibly enhanced as well to increase aggression.

So I could have started this blog post a different way:

The Bad Batch is about eugenics.

As such, it is still unclear to me whether or not we should consider Clone Force 99 disabled, even if the show is about genetic disability. Which makes the title of the show a bit misleading, yeah? A “bad batch” calls to mind a situationally defective batch of product. Something to be tossed out or ignored, like data or eggs.

This is not the reality of Clone Force 99. According to the performance standards of clone troopers and the Kaminoans who produced them, Clone Force 99 are not “bad” at all! They are very, very good. They are designer clones.

If we want to truly engage with a “defective clone product,” that was accidentally, congenitally disabled, then we must step back into The Bad Batch‘s series’ predecessor: The Clone Wars animated series.

I have been sitting on a post about The Clone Wars for quite some time, but haven’t been able to bring myself to write it. Which is part of the reason that my stomach leapt into my throat when I saw yesterday’s ads for The Bad Batch, and why I was on the edge of my seat for my entire viewing of the first episode.

Clone Force 99 is not the first introduction we have to genetically abnormal clones.

Clone 99 is.

In Episode 1 of Season 3 of The Clone Wars, “Clone Cadets,” the audience follows the training of a new squad of clones called Domino. Echo (member #5 of “the bad batch”) is a member of this earlier squad. As Domino trains and struggles to work together as a team, they engage with a clone called 99. 99 is described as genetically “malformed” and “defective.” He appears and speaks in a way reminiscent of the physically and cognitively disabled. His skin is wrinkled and discolored, with one droopy eye. He has a hunched back and walks with a limp. He is deemed unfit for combat. He works as a janitor.

He is characterized as wise, hopeful, interested, interpersonal, and ultimately, inspiring. As Domino pushes back against teamwork and relationship, 99 teaches them how to care for and work with each other. Perhaps unsurprisingly, he becomes the linchpin to the final battle at the end of Episode 2, “ARC Troopers”, saving the day, and sacrificing his life. He is made an honorary member of Domino Squad, receiving accolades in death. “We lost a true soldier. He really was one of us.”

I am teary as I type it, for the same reason I avoided writing the post I’d wanted to write about 99 for almost a full year. It was deeply triggering to watch. I haven’t watched The Clone Wars since.

99’s story follows the arc so many pieces of fiction do: The cognitively disabled person is underestimated, neglected, ostracized, but tugs at the heartstrings of the audience as he or she proves themselves both thoughtful and worthy. These sorts of characters almost always end up dying at the conclusion of their narrative, a “necessary sacrifice” that is meant to call to our minds the senselessness of war. And yet, it is also a “reasonable” death meant to keep us placated. None of the main, non-disabled characters would ever die in such a way. Disabled side characters exist to invoke the gravity of the situation, without causing any “real” harm to the core of the story. It all hinges on the suspicion that they probably would’ve died anyway, are somehow closer to death than non-disabled persons, and somehow more suitable to it. It is “inspiration porn” in the clearest sense.

So lest any viewers of The Bad Batch come away thinking Star Wars is veering into new territory, know this: The Star Wars universe already has a disabled clone in 99. It is after him that Clone Troop 99, “the bad batch” itself, is named.

In fact: the title of the whole show, The Bad Batch, comes from a line of dialogue in “Clone Cadets.” One of Domino’s members, Hevy, tells 99 that the reason the team cannot seem to work together is that they are a “bad batch” of “failures.” Here, what defines a “bad batch” is an inability to work together. In this episode, the “real” defective clones are those who do not see themselves as brothers in relationship to one another, contrasted with the “apparent” defective clone 99 who is literally genetically deviant but has a better sense of the brotherhood relationship than any of them. This is, again, very different from the sense of a “bad batch” that we get from the show of the same name.

It is interesting then that of all the Clone Force 99 members, Echo is the most clearly physically disabled. That he, who knew 99 in-person, is the one who carries on that legacy of truly readable disability in his body. However, in my mind, it is Wrecker who appears most akin to 99 narratively. I am already bracing for him to die.

Star Wars has dealt with explicit disability before in two instances that I can recall:

First, Luke’s amputated arm at the end of Episode V. His injury is immediately rectified by a sleek prosthetic limb. No harm, no foul.

Second, the blind Force-believer (and, arguably, user) Chirrut Imwe from Rogue One. While his blindness contributes to a number of humorous interactions and scenes, he is ultimately uninhibited by his disability. In fact, in the conclusion of the film, with the again arguable assistance of the Force, he is able to miraculously achieve a feat that turns the tides of the battle before succumbing to his death. It is, again, a death that is used to deeply move the audience towards sadness. I knew the moment he appeared onscreen that he would not survive. Perhaps fortunately, the story of Rogue One does not single him out like The Clone Wars does 99.

It is important to note here the connection between a disabled person and a heightened sense of spirituality. This is also a very common trope in media depicting disabled persons, as well as in religious communities in our own real world. It is how we in Christian spaces have been taught to interpret Jesus Christ’s healing miracles against the backdrop of the Gospel of John 9: 1-3…

“Now as Jesus passed by He saw a man blind from birth. His disciples asked Him, ‘Rabbi, who sinned, this man or his parents, that he was born blind?’ Jesus answered, ‘Neither this man nor his parents sinned; it is so that the works of God might be made visible through him.'” (NASB)

Now to be sure, associating disabled persons with unique spiritual abilities or favor with God is certainly better than associating disabled persons with sin. And, to be sure, Christ does indeed favor the marginalized, including the disabled, in particular ways (namely, in the attention he gives, to use the brilliant theological proffering of my friend and classmate Rebecca MacMaster.) As such, we can indeed learn something about community and Christlike, reciprocal relationship by spending time among people on the margins.

However, these views can also easily slip into inspiration porn again. We can start viewing the purpose of disabled people as being to teach us something about God, love, relationship, holiness, etc. (Sound like 99, anyone?) Disabled persons are human individuals in their own right, with their own desires, goals, skills, dislikes, and relationships with both other persons and God.

This is, again, why narratives like 99’s are so harmful: His character clearly served the sole purpose of teaching the main characters something about love. We must start to see disabled persons as main characters in their own right.

Views about spiritual and religious favor or power also encourage the opinion that the disability is “special,” when in reality, disability is supremely normal. All societies contain disabled persons, even if the responses to disability is different. All people will experience disabling conditions at some point in their lives, even if its the privileged disabling experience of old age. I shudder to think of what became of other genetically malformed clones; the Kaminoans admit of Clone Force 99 in episode one: “Five are all that remain.”

We should see that, across these Star Wars installments, disability is viewed as an ultimately useful impediment narratively. However, it is those who experience cognitive disabilities who fall prey to the most harmful of tropes. This is consistent with various other kinds of media, as well as various narratives in our society writ-large. Physical disabilities are generally viewed as more acceptable than cognitive ones. During one hospital scene, Clone Force 99 are informed by a medical droid that they are “genetically defective.” Tech is quick to reassure them, “we’re more deviant than defective.” Oh phew, crisis averted. In other words: “we’re not as bad as 99 was, because we are obviously more normative and useful.”

In the very next breath of the same scene, Clone Force 99 is made aware of Admiral Tarkin’s presence, to the chagrin of Echo, whose wartime injuries and mechanical enhancements had something to do with Tarkin. The “bad batch” is encouraged to do everything they can to appease the Admiral, lest they wind up “turned into that,” pointing back at Echo. Even though they are all on the same team, and Echo himself is not genetically deviant like the rest of them are, his teammates still treat his disabilities as markedly worse than theirs because their physical bodies are intact.

Above all, clones assert that they are far superior to droids. This is, in part, why Echo is singled out: Tech explicitly says “you are more machine than man, at this point.” We know how machines are treated by clones. We also know that droids are given personalities, memories, and feelings in the Star Wars universe. They’re not quite human, but they’re just animalistic enough to tug at our heartstrings when they die. I hope you see the similarities between these narrative functions and the narratives of cognitively disabled characters. This is not to speak to beliefs about human relationship to animals, but to call out the ways the cognitively disabled are often described in wild, animalistic, non-rational, even non-human terms. (*nods directly and aggressively to Alasdair MacIntyre’s Dependent Rational Animals*)

Because of the very same discriminate preferences–physical disabilities are better than cognitive ones, invisible ones more manageable than visible ones, persons with aids and prosthesis are proportionally less human than those with full use of all their limbs and organs– various laws and medical protections in our own country were written first in terms of physical accessibility. We still, today, see “access” as the leading call-to-arms for disability advocacy movements. It is vital that we see that “access” does very little to…

1). Meet the needs of cognitively disabled persons

2). Address the stigma faced by all disabled persons

In other words: a ramp, a lift, or a hearing aid won’t make people talk to you more respectfully. Access only goes so far.

In many cases, access is really just a tool for assimilation. The goal of many physical aids is to enable the body to operate normatively, that a person might come to participate more fully in social positions. Now, many disabled persons may desire aids. But some may not. Regardless, as consumers of media and participants in a society that contains disabled individuals, we must come to see that we continue to orient disabled persons towards utility. Getting and keeping jobs, participating “normally” in school, family, and Church, etc. These circumstances contain inherent dignity, and they are deeply worth protecting. However, they continue to trick us into viewing the disabled along a spectrum of usefulness and productivity. How much can that person do or understand? How old are they mentally, that I might appropriately label their behaviors for my own comfort? How could they be of use in “their own special way”?

Having this knowledge or demanding these skills of disabled persons should change absolutely nothing about the way they are viewed and treated.

It strikes me that this is the statement The Bad Batch has made thus far: These clones are genetically imperfect, BUT they are exceedingly useful.

This is not to say that exploring genetically divergent clones should be avoided. On the contrary: This is so, so important.

For one thing, it is vital that we see genetic divergence in every world we construct, fictional or real. Period.

I have felt such unrectified anger since watching 99’s The Clone Wars episodes. How dare Star Wars, a completely fictitious universe full of every imaginable type of creature, handle *literal* human genetic variants so stereotypically? I view The Bad Batch as an opportunity to expand this absolutely essential exploration, with the full knowledge that they might not do it perfectly. At least they’re doing it more.

For another, exploring genetically divergent clones makes way for examination into the ethics of cloning, questions of where in a person one’s personality and identity lies, and the bounds of science. Since meeting 99, I have long wondered about the bounds of genetic defectiveness of clones. Most interestingly: Could the clones’ sex chromosomes be genetically divergent? Could we ever see an intersex or female clone? (I’m thrilled to *spoil* that The Bad Batch gives us an answer: Yes!)

Depending on where the story goes from here, this could have amazing implications for the representation of intersex folks. Especially for those who believe transgender identities and the existence of a spectrum of gender all violate natural laws, increased discussion and representation of the genetically intersex can show that this is scientifically untrue. People are in fact born with divergent–in some cases, both!–sets of sex chromosomes and characteristics.

However, Star Wars is walking a very dangerous line on topics of eugenics and survival of the fittest. In one scene of The Bad Batch, the audience gets a glimpse of young Saw Gerrera, who is still reeling from Order 66 and the transition from Republic to Empire. In response to Clone Force 99 questioning their own allegiance to the Empire, Gerrera asserts that everyone must “adapt and survive, or die…” While this can certainly be interpreted as a realistic, political call to managing one’s expectations in order to stay alive, it is also explicitly reminiscent of arguments for natural selection and survival of the fittest, topics that explicitly implicate genetic variance.

In short: The Bad Batch will need to be careful not to implicitly or explicitly make the argument that only through intentional genetic manipulation can a clone survive. With the Jedi gone, clones are some of the only humans the audience can see themselves in and follow narratively. What are we being told about our own genetics if this is the case? It is certainly worth considering.

Like I said, there has only been one episode thus far. I greatly look forward to seeing where the show goes from here. I am hopeful that this might be the beginning of greater, more explicit exploration of disabled protagonists in Disney’s media.

It is worth considering how superhero stories are often implicitly about topics of disability and bodily variance (I think the X-Men stories handle these topics most explicitly), but that the Marvel Cinematic Universe has largely avoided these conversations. Perhaps a topic for another post?

I hope you watch The Bad Batch. But I implore you to watch Season 3 Episodes 1 and 2 of The Clone Wars first. It seems profoundly unjust not to include 99 himself in the story of Clone Force 99. Luckily, you can find both in the same place, as they’re both on Disney+.

May the Force be With You, Always– Madison

(Okay…say it back: “And with your Spirit.”)

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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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Categories
health PCOS

Bleeding to Death

My menstrual cycle has never really been private.

I got my period two months shy of my 15th birthday. It was my first time away from home, at the California State Summer School for the Arts (CSSSA), where I was studying, what else, creative writing. Thanks–no really, I’m so thankful–to a genetic predisposition towards excessive vaginal discharge (oh yeah, we’re going to be biologically accurate and extremely open. This blog is about the body, remember?), I had brought with me a stash of panty liners. But I certainly was not expecting blood. My mother drove from our Northern California town to Valencia with a day’s notice to make sure I was okay. She took me for my first pedicure, got me Chili’s skillet queso dip (which to this day is still my period food), and brought with her plenty of additional period supplies.

My being a “late bloomer” was, for whatever the reason, endlessly fascinating to my female extended family members. My mother comes from a large family of sisters who all, from around the time I was 9, expressed a deep interest in my physical development, frequently commenting on my cystic acne, flat chest, absent period, and even the changes to my “beautiful blonde hair” acquired throughout puberty. These conversations left me feeling like a concave, bloodless alien with pepperoni skin.

During my time as a freshman cheerleader, having your period during practice or a travel game meant swapping pads and tampons like you would swap bobby pins, hairspray, and Nars’ Orgasm blush. I never had anything to swap, and I was also never in need. Which meant I never had to worry about bleeding through my rolled-up skirt, but I also felt even more like the odd one out. Which I already was! I missed cheer camp for creative writing camp that Summer Of The Period. Coach benched me for the season. I went to every practice and then sat in the bleachers every. single. game. You know it’s bad when the mean moms feel sorry for you, a daughter who is not theirs.

I think, without these competitive pressures so often found in groups of female family and friends, I wouldn’t have felt so alien without a period. My mom regularly reminded me, as I cried to her about my body, that she too was a late bloomer. And, wouldn’t you know it, I do take after her in almost every way.

Except one. My periods were dangerously heavy.

Nobody really tells you what to look for when it comes to period blood. You can estimate colored-in red drops on the side of the tampon box. But clots, color, and sheer amount of blood are all indicators of health. So what’s the line between regular heavy and dangerously heavy?

I certainly didn’t know. From the time I started college, at the height of my ice snacking (read the Series Intro if you haven’t yet), my period was heavy. I regularly bled through a maxi pad or super tampon in under two hours. It was the norm to use both, and to change them both every four hours. I was spending upwards of $40 a month on period supplies. Fortunately, my periods were a normal length of days.

Even with my incessant ice chewing and constant washing-of-soiled-undies, I never once thought anything of it. I assumed this is what having a period was. In fact, I also never had cramps, so I considered myself lucky. I can remember telling people my period was easy.

There is something in here about how women are conditioned. We are told women have higher pain tolerances, that women mature quicker, that women are naturally strong because eventually they will undergo childbirth. It becomes how we encourage one another. It becomes a point of bonding. Women are strong. But that doesn’t mean we have to be every moment of every day.

The strength is often silent. Menstruation is often private (unless you too have a hoard of aunts who ask you every holiday whether you’re bleeding yet.) We sneak pads from our backpacks to our back pockets in math class hoping the boy seated behind us doesn’t see. Even older women strip their blood-stained sheets from the bed in embarrassment, thinking they ought to have known better, as they toss them into the pile with the clothes of the children they birthed.

It is all exacerbated in Christian circles. We are raised gazing each Sunday at a cross of holy bleeding. We are told to offer up our sufferings, and consider the ways our blood aligns us with Christ. Rather than share with our communities the ways we are hemorrhaging, we are told to only share it with Him.

As I tried to make sense of this connection between bleeding to death and theology, it occurred to me to reach out to my dear Catholic UChicago Divinity friend Rebecca MacMaster, whose current major project is on what she’s calling “Menstrual Theology.” I reached out for her thoughts, and here’s what she said:

“In some ways there is nothing more Catholic than a woman in pain. Jesus was brought into this world by a woman’s anguish. Our feminine mystics chastised their flesh and mortified their bodies, seizing in pews and genuflecting in small cells. Our feminine mystical saints starved themselves, ridding their bodies of a monthly flow of blood while rending their flesh to create a new one. Their work was salvific, unimaginable and yet eminently imaginable.

“When I started my research into the hemorrhaging woman in Mark, I expected to read about her bleeding. I thought it would be wall to wall articles about her body and her pain and her faith. But that’s not really what I found. Instead most focused on purity laws — often warping Leviticus to further an anti-Semitic agenda. Those who mentioned her bleeding focused on the healing, often claiming that she became instantly menopausal under Jesus’ touch.

“The message seems clear, there is nothing in menstruation that could be for the greater glory of God.”

“To be honest, my bleeding has never felt salvific and neither has my pain. I remember dim afternoons clutching my stomach and begging God to make it stop, like Jesus pacing alone in dark Gethsemane. It felt perfectly normal and yet also unspeakable. Too ordinary but also too gross for discussion. It just was. Some cramping is normal, take an Advil. That’s all I learned in health class. Nothing worthy of a doctor’s attention let alone God’s.

“But God heard the hemorrhaging woman and He healed her — not to menopause I would argue but to a place of healthy menstruation. There is always room for the glory of God.”

Hearing these brilliant thoughts from Rebecca (who you can find here on IG), I felt things click into place. I was all at once reminded of the exact type of messaging and friendship I longed for as I navigated puberty: One that was open with real, bodily experiences without shame, while speaking the truth of a loving God.

As I bled cups of blood each month, no one ever told me “You shouldn’t be feeling that way. You shouldn’t be bleeding like that.” In fact, the consensus seemed to be “no two cycles are the same,” “everyone’s periods are different,” “offer it up,” and “being a woman is hard.” This was all reassuring when I was anxiously waiting for it to arrive. And to a certain extent, it is all true! Periods are different! Being a woman IS hard! But, our periods shouldn’t necessarily be as different and hard as they are. Without open conversations about bleeding, women suffer in silence thinking their signs of reproductive trouble, and the lack of space for them in both religious and secular circles, are all “just the way it is.”

Sometimes we don’t even have our doctors to talk to! I spent one year on iron supplements to combat the iron-deficiency anemia that resulted from my heavy cycles. I even took additional vitamins to aid in absorption. One year later, when I got my blood levels checked, my iron levels hadn’t raised at all. Not one bit. In fact, they were lower.

It is here that I imagine many women will empathize: My doctor was not concerned. She did nothing to explore what could be causing my heavy periods. She did nothing to explore why my iron wasn’t being absorbed. She didn’t run a single hormone panel. Even as I sat crying in her office, she said I needed to eat more beef and spinach and sent me on my way.

And a month later I nearly died.

I was on a ski trip in Truckee one late January weekend with Guy, who is now my partner but was not at the time, our good friend Dana, and Guy’s best friend Austin, who at the time I did not know. I was not expecting my period for another week, but on the drive up the mountain, I began to bleed. And I did not stop.

It was like an open, gushing wound. Constant blood loss for 36 hours. I was passing clots the size of my fist. I had brought with me a week of period products just in case, but even that was not enough. I exhausted Guy’s mom’s stash of maxi pads from the 80s in one evening. I went through 30 pads and 7 tampons in 24 hours.

All the while, I was trying not to draw attention. Friday night I simply went to bed early. Saturday I decided to mention my period had started, so I wasn’t feeling terrific. We played in the snow. We cooked and watched Star Wars. By Saturday evening, I was going to the bathroom every 20 minutes. I finally had to let all three in on the fact that I was bleeding nonstop and thought I needed to see a doctor.

It was actively snowing and the streets wouldn’t be plowed until early morning. We could’ve called an ambulance, but they might not have been able to reach us either and it felt too serious for “just a heavy period.”

I felt dizzy and faint. I ate a granola bar in case my blood sugar was struggling. I couldn’t lie down or I’d stain whatever I sat on. I was too weak to stand in the shower, so Guy made me a bath that quickly turned to sitting in a pool of my own blood. I was freezing and couldn’t get warm.

Around midnight I went to the bathroom and as I got up, collapsed and blacked out on the bathroom floor, pants around my ankles.

I did come to, I cleaned up the floor, and I quickly expressed immense gratitude that I had not hit my head or otherwise injured myself in the fall.

Nobody slept that night. We drove back down to our college campus at 5am Sunday morning. It amazes me that I felt well enough to be taken to campus. I sat in my dorm room and made an appointment with my “eat more beef” doctor for that afternoon. Unable to walk across my dorm room without losing my breath and collapsing, I still thought myself alert enough to drive myself home to my parents’ house. I even lugged my hamper full of dirty laundry alongside me, without second thought of its weight.

On the way home, my doctor called back and told me to go to the Emergency Room instead. Something had come up, but she was worried about me. My mom met me in the ER.

That’s when the reality of the situation became very clear. I was taken into triage where the nurse drew blood, turned sheet white, and stated in no uncertain terms that she was “extremely happy I came in.”

I had lost a third of the blood in my body.

I stayed the night in the hospital where I received three separate blood transfusions. (I also received an incorrect dosage of intravenous potassium. I was in so much pain from the corrosive liquid I couldn’t sleep a wink. The morning doctor simply rolled her eyes and said, “they shouldn’t have given you that.”)

By Monday morning, while I had regained full blood levels and every ounce of desire to chew ice evaporated and is still gone to this day, we still had not discussed what caused the bleeding. I was visited in the morning by the on-call OBGYN who quickly prescribed me–and every woman knows what’s coming– the birth control pill (which will be the topic of the next PCOS series entry.)

The experience was not immediately scary while it was happening. Again, there was still a large part of me that was convinced this was just how periods were. It was only once I was in the hospital that I realized how deeply, deeply fortunate I was to be alive and healthy, with all organs intact.

This is the beginnings of my offering to the budding online discussion about the nitty gritty of periods. Especially in Christian communities that celebrate modesty and privacy, we are comfortable speaking in general terms about cycles, in the context of fertility only. We echo the general culture’s displeasure with red liquid in tampon commercials. Men and women alike still joke about how women go to the bathroom in groups, with very little consideration for how deeply biological the vulnerability of bleeding is for animal species like us. It’s not for talking sh*t about whoever isn’t in the bathroom with us, it’s about needing someone to clean and pin up my white winter formal dress because I bled through the bottom hem and can’t reach it on my own. We laugh about the women with severe PMS and how inconvenient it is for those they are around. But we still don’t talk enough about quantity or quality of period symptoms: Blood, cramps, clots, mood swings, aches, fatigue. The number of women who have reached out to me over Instagram to ask what signs and symptoms informed my PCOS diagnosis makes me all at once hopeful and sad: So many women lack information, community, and trustworthy medical care. So many women are fed up and paving their own way outside the doctor’s office.

One of these newest, way-paving resources is the online women’s forum femUnity. You can visit their website or find them on IG here. FemUnity provides a constructive, community-focused solution to panicked symptom-searching, led by women for women. Both their forum and their social media presence center on crowd-sourced information of real-life experiences, to paint a picture of the many possibilities and intricacies of women’s health, both reproductive and otherwise. I highly encourage you to check them out!

So yes, everyone’s period is different, but I’m going to lay out the things I wished I’d been told (informed by facts I’ve received from practitioners I’ve worked with post-near-death-experience.)

If you bleed through a maxi pad or super tampon in less than 4 hours, you should talk to a doctor.

If you need to use both at the same time and still bleed through them in less than 6 hours, talk to a doctor.

If you go through more than 8 period products a day, talk to a doctor.

If you pass clots larger than a quarter, talk to a doctor.

If you experience cramps that are not alleviated by traditional ibuprofen or acetaminophen…

If you experience mood swings or feelings of anxiety or depression outside of 2-3 day windows at the start of your period…

If you experience any of these period symptoms outside of a 7-10 day window…

Talk to a doctor.

I know it’s not always that simple. I know that doctor might not listen. I know I can say “talk to another one,” and that might not be an option for you (it wasn’t for me until I had access to my university’s medical center while I got my MA.) I know doctors with online practices have put their expertise behind giant paywalls. It can be incredibly frustrating pursuing a diagnosis. I believe you. You are doing your best. You are not failing because you can’t find an answer. (I will be providing a list of the resources that have helped me later in the series, but even then, if they don’t work for you, you are not failing.)

If you do talk to a doctor, you might think, “Madison, what do I say? What do I ask?” I would suggest…

1). Asking for a blood test that includes a “comprehensive hormone panel.” They’ll look at estrogen, progesterone, luteinizing hormone (LH), follicle stimulating hormone (FSH), testosterone, cortisol, and more!

2). Asking for a pelvic ultrasound

3). Making sure you’re current on your yearly physical exam and pap smear. In many cases your primary care provider can do it, you don’t necessarily need to have a designated OBGYN.

Beyond that, my biggest suggestion is to talk to the women in your life whom you trust about your period. If something feels odd, ask someone in your life if they experience it too. If they say no, don’t take that as a point of shame but a point of motivation! Keep asking.

How did I know to do these things? I’ll share my list of PCOS tips, tricks, and resources soon. I didn’t know to start looking for these things until much further into my journey to a diagnosis. Coming up next we’re going to talk about my experience on the birth control pill, then we’ll talk about how it has intersected with my gastrointestinal health, and then about PCOS resources and how it all intersects with family planning.

If you’re struggling with your period: You are surviving. You are doing your best. Your body knows what to do and how to keep you alive. Christ loves you and personally cares about your healthy bleeding. I am always here to chat. <3

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Categories
health

Wheelchairs and Chandeliers

During my year of service as a Lasallian Volunteer in Oklahoma, over dinners of salad, rolls, and some sort of meat mixed with some sort of cheese, one elderly Christian Brother I lived in community with would ask about my family. He had asked many times before, but his memory was going. I told him about my parents, my military father and my stay-at-home mother. I told him about my younger brothers, about Matthew’s special needs. He listened, wide-eyed, responding with the occasional guffaw as I recounted Matthew’s tendencies, likes, and dislikes. And then he concluded his questioning with the statement he always concluded with: “He sounds like a burden. I’m amazed your parents didn’t institutionalize him. Your poor mother.”

He sounds like a burden, he sounds like a burden, he sounds like a burden. My eyes would well up. My throat would close. Sometimes I tried to explain, gently, that the world treats disabled persons differently now. Institutions are not as popular. There are more resources for family. Other times I tried to explain that his statements were uncalled for; “He’s not a burden, Brother. He’s amazing. He has the most fantastic sense of humor. He lights up my life.” Even if these strategies worked and I was able to teach this Brother something, by the next dinner that spot of short-term memory was gone, and a rehashing was inevitable. Eventually I just stopped talking at dinner.

I am still healing from those dinners. My family not being welcomed at a dinner table they weren’t even at left me feeling like the fullness of my person wasn’t welcome in community. But I think about that word often: burden. Not only because it offends me, but because the truth is, I use it all the time. About myself.

Raise your hand if you’ve ever gotten sick or injured and felt like a burden? If you’ve ever apologized for being in need of someone’s assistance? If you’ve ever felt more upset by the inconvenience of being sick than the actual symptoms of the sickness itself? If you’ve ever felt ashamed of your depression, anxiety, or grief because it makes you feel helpless and reliant upon others?

It’s hard when our culture of “being on a health journey” is supremely individualistic. We don’t think of it that way, because it’s marketed to us as being better for the planet (turning the attention outside ourselves) and better for our children (turning the attention outside ourselves.) But this wellness culture is not communal! It is built on the idea of personal habits, personal research, and personal improvement. “Self” care, rather than community care. It’s no wonder that feeling sick or being injured feel like failures! We are told at every turn that there’s a ritual for that. We simply neglected to manifest it.

Then we do ask for help and we immediately feel worse. “Because she had so many other things to do today.” “Because he had to take time off work.” “Because I had to take time off work and inconvenience my team.” “Because I missed an important test.” “Because he’s already been so stressed, and now this.”

I think back to high school sick days. At first, the thought of lying burrito’d on the couch while eating spaghetti o’s and watching endless hours of daytime television gave me a feeling of immense relief. But soon after, the relaxation wore off, and I began to panic about everything I’d missed at school that day. I also felt guilty for how much additional work my mom had to do in order to tend to me, all the while still caring for my younger brothers, one of whom needed regular one-on-one attention due to his disabilities.

Other times, taking sick days was a reprieve for my mother, who enlisted me in helping her with the day’s tasks and care needs for my siblings. Me being home meant another set of eyes and hands, even if I was injured or unwell. On these days I felt far less guilty and burdensome, but I also wasn’t actually able to rest.

I would argue we are all vacillating between one side and the other when we experience feelings of burden. We are embarrassed by our own mental, emotional, and physical impediments because they leave us less capable of doing the things that have come to be expected of us from school, work, friends, and family. We get tired of relying on other people. Our inner voices reprimand us for being so needy. We begin to panic about what resting means for our independence and success. We jump into compensating for our rest. We push ourselves to do more, more, more.

It’s our social system of constant productivity, and uneven distribution and recognition of labor, that make us feel like burdens when we are simply being human.

Your partner had a million other things to do today and now they’re caring for you. What makes tending to a loved one equally or comparably burdensome to the other things in one’s life? Is it the pressure placed on them by these other things? A parent who’s overwhelmed by child care now has one additional child to tend to who would otherwise be in school. Might it be that the onus of this burden actually falls on our lack of communal supports for parents? You miss work or school and are now irreparably behind. Might it be that our systems of education and work require so much of us, all crammed into a single day, that we feel the immense pressure not to miss even one? Your unclaimed sick days and vacation time are calling to you, reader. They’re yours for the taking!

We can turn this conversation from the negative and accusatory into the positive and imaginative in a way The Nap Ministry has been pioneering: What might rest, recovery, and health look like if we had robust systems of support in place? Less to do in a day? How would you relax if you knew you didn’t have anything else to do? What would you permit yourself to do? How would it change your relationships? Your relationship to your body?

Thinking imaginatively about how the world might look and how we might feel if we prioritized interdependent care and rest is central to working against ableism.

If you’ve read up until this point positively identifying with our cultural standards that demonize the occasional, human experience of illness and injury, I invite you to consider what this means for persons who identify as disabled and/or chronically ill. Earlier I said, “We are embarrassed by our own mental, emotional, and physical impediments because they leave us less capable of doing the things that have come to be expected of us from school, work, friends, and family.” What about the people who…always feel that way? You injure a limb and experience the inconvenience and shame of limited mobility until you heal and are back to work, double time. What about a person who will never experience normative mobility? You experience a moment of panic while out on a date and then immediately feel guilty for the way your emotions impacted your partner’s experience. What about persons who do not have the ability to emotionally regulate, ever? Should they be embarrassed? Are we embarrassed of them?

This is a tricky line to walk. For some caregivers, caring for a person with a disability or chronic illness does feel like an immense burden. Caregiving requires additional resources of money, physical assistance, emotional care, and time. Sometimes disabled persons do things that do embarrass their caregivers without intending it. These feelings might be exacerbated by crushed expectations of an able-bodied child or life-long partner.

Individuals experiencing disability may themselves identify their life experience as extremely burdensome, to them and to their loved ones. Especially a person who, for a portion of their life, experienced what we would consider normative health. Accidents and the onset of illnesses and diseases all contribute to feelings of burden.

How do we resolve this tension? Say it with me: “A situation can feel burdensome. People are not burdens.“

We consider injuries and illnesses burdens to our selves and our to-dos. We consider our injured and ill selves to be burdens to others. It’s a conflation: “This illness is burdensome so I am burdensome.”

This is dangerous for people with disabilities. While you work your way out of feeling burdensome by proving to yourself and others that you can not-be-that-way by doing what is expected, people with disabilities face this slippage within their own minds like we do and from others who project this idea of burden onto them (like the Christian Brother I used to live with) because of the expectation that they cannot do what would prove otherwise.

What’s worse, when it’s status quo to work despite being unwell, but we speak with tones of amazement when we see a disabled person working despite their disability, we are betraying our preconcieved assumptions about who we thought could work. When we celebrate a disabled person getting a job because it shows they are more capable than we thought they were, we are showing exactly what we value (and it’s not humanity, it’s work.)

In returning to our imagination before: How might these feelings and experiences be ameliorated by greater resources? Greater support? Less pressure to be productive? Fewer things pulling us in fewer directions? How might a family receiving news of a child’s diagnosis feel some alleviation of their disappointment if met by robust commitments from medical professionals, family members, community partners, religious organizations, and friends to the shared responsibility of supporting the child’s wellbeing? What would our world look like if all challenges were met with these responses of togetherness?

One thing’s for sure, we would rightfully blame society for lacking sufficient resources, not the individual for lacking sufficient self-reliance. Alleviating burden means establishing and amending systems around the realities of bodily-ness, rather than contorting our bodies to fit the systems.

With this in mind, I invite us to consider why people are upset by the latest news about singer-songwriter Sia, and her new movie portraying a protagonist with autism.

For the lead role, Sia cast Maddie Ziegler, her everything-starlet, rather than an actress who actually has autism. When prodded by Twitter users and activists asking why she didn’t cast someone with the experience to portray someone with the experience, her responses can be summarized as, “It would have been burdensome for the actress to perform the requisite tasks, and it would have been burdensome for the rest of the cast and crew to adjust to the increased needs of an autistic lead actress.”

Note: the word Sia actually used was “compassionate.” Apparently, she had worked with an autistic actress before hiring Ms. Ziegler, but due to the stress this autistic woman experienced, Sia found it most “compassionate” to cast someone else. What if Sia thought she was being compassionate when really, this woman was heartbroken?

It is right for alarms to immediately blare in our minds when we see “compassionate” and “disability” in the same sentence. Especially if the compassionate action is a removal of opportunity or rights from a disabled person. Throughout history, the mistreatment, institutionalization, and even death of disabled persons has been oft-labeled the “compassionate” decision. Sometimes the words used are “merciful,” or “dignified.”

Real mercy, dignity, and compassion will never strip away the rights and humanity of any person.

The Church stresses the centrality of intrinsic human dignity to all things. This human dignity is rooted in the image and likeness of the God who created us, a God who we are told is merciful and compassionate. Any action labeled “compassionate” or “merciful” that does not pursue or protect the sustenance and fruitfulness of life, the foundation of God’s own Creation of us, is a contradiction. [CCC 1700] And remember, life can be fruitful in ways other than birth too! Your labor, your art, your service, and your prayer are also fruit that demands the fullness of this same protection.

We also need to be aware of how individual words can virtue signal. Compassion, mercy, and dignity make us think of Scripture. For me, they evoke (and invoke!) the God of Mary’s and Zechariah’s canticles:

“He has mercy on those who fear Him, in every generation. He has shown the strength of His arm. He has scattered the crowd with His conceit. He has cast down the mighty from their thrones, and has lifted up the lowly.” [Luke 1:46-55]

“He promised to show mercy to our fathers, and to remember His holy covenant…In the tender compassion of our God, the dawn from on high shall break upon us, to shine on those who dwell in darkness and the shadow of death, and to guide our feet into the way of peace.” [Luke 1:67-79]

I have memorized these canticles. During my year in Oklahoma, we prayed them at morning and evening community prayer. Every day, immediately after sitting through a meal where I defended my Matthew against accusations of burden, I sat beside the same Christian Brother in our green-carpeted home chapel, reciting these words over and over.

Community that year was overshadowed by disaster: A tornado that narrowly missed our home, the unexpected death of a dear friend to community, a life-altering illness. The months were a parade of injury, sickness, grief, and pride. The words we prayed twice daily never seemed to come to fruition.

This is how I know for certain: Just because you say a word doesn’t make it manifest. Saying “compassionate” doesn’t make you compassionate. Especially not when, in your very next breath, you tell an autistic woman sharing her experience, “maybe you’re just a bad actor,” instead of having true “compassion” and considering the bias that might be operating against her…

Now, we have no way of knowing the fullness of the Sia story. When we don’t ground statements (and movies) about disability in the lived experience of actually-disabled people, they will always be speculative and open to the influence of bias. We can operate under a lens of true compassion and assume that, with Sia’s commitment to featuring disabled, queer, and trans performers and characters as it is, her intentions were probably good. However, we are also right to operate from a lens of suspicion, and be bothered by the continuation of a narrative that working with a disabled person is burdensome. Sia is maintaining harmful expectations of labor, asking the autistic body to conform to the system of Hollywood, rather than demanding Hollywood conform to the reality of an autistic body.

“Come to me, all you who labor and are burdened, and I will give you rest. Take upon you and learn from me, for I am meek and humble of heart…” [Matthew 11:28-29]

The annotations in my New American Bible, Revised Edition expound upon this Biblical discussion of burden in its societal context: The burden to which Christ was referring was the burden of the Law. When we see “The Law” in Scripture, we should assume the referent is the Law of the Hebrews, which we know from the Old Testament was a vast and encompassing code of conduct that formed the entirety of Hebrew society. We can interpret this passage, accurately, as Christ speaking to people for whom the demands of society’s present structure and expectations are exceedingly heavy.

Christ Himself calls us to take up His mission of breaking down barriers between those burdened by society’s expectations to create a New Kingdom, one where all people, especially those outcast because of illness, are welcomed.

We start by recognizing intrinsic human dignity. We distinguish between the onset challenge and the person experiencing it. We think imaginatively about what a world might look like with greater supports. Then, we build those communities. We ask for help. We humble ourselves, remembering that humility and self-deprecation are not the same. We commit to being present to those who need assistance. We permit ourselves to be imposed upon (which is one definition of the word “meek”) and do so with gladness. This is how we lighten the load.

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