Categories
health

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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Categories
disability faith

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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Categories
childhood disability faith family

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

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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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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