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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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Our Planetary Body: Series Introduction

It’s Earth Day.

You probably know this already from the 37 emails you got advertising Earth Day sales.

In recent years, the attractiveness of an eco-friendly, “all-natural,” low-waste lifestyle has skyrocketed. By contrast, the states of our waterways, forests, soil, weather, ocean levels, atmosphere, biodiversity, and more are still rapidly worsening.

Perhaps less commonly-known is that this worsening is not a result of individual failings. The biggest contributors to environmental degradation are corporations and governments. Through the burning of fossil fuels, air travel, factory production, deforestation, destruction of land and waterways, and more, the biggest culprits are the exact people who want us to think it’s all our individual faults. We used too much aerosol hairspray, we didn’t recycle enough.

The “all-natural,” “go green,” and “reduce, reuse, recycle” movements we were raised with were developed in part to place the onus of responsibility on the individual. This is not entirely inappropriate–we do each have an individual responsibility to protect our common home–but nevertheless we were taught these things in part to distract from the real culprits: commercial enterprise.

What do macro-responsibilities and micro-responsibilities have in common? Gluttony. Consumption. Stuff.

Whether the stuff is clothing, plastic, packaging, dairy, crude oil, hunting, fishing, driving and traveling… we have too much stuff.

This is where we see the rise in popularity of “minimalism.” Sparsely decorated walls, capsule wardrobes, plant-based diets, wooden toys… We have made “having less” extremely attractive. The number of white, Christian influencers peddling celery juice in repurposed mason jars while wearing yesterday’s thrifted all-white ensemble they dried using woolen balls is too many to count. And yet it’s true! If we all had less stuff, the planet would be healthier.

The issue is this: The problem does not go away simply by yelling at people to have less stuff. Why? Because having less stuff requires having access to higher quality stuff that will last longer as well as package-free options that reduce waste. All of these things cost $$$$. All-natural alternatives often cost significantly more than the cheap, plastic, packaged, single-use, or fast-fashion alternatives.

This is not actually bad, because it often means companies are paying their workers a living wage in order to produce their items (Now, this is certainly not always the case. Many brands will hike up their prices simply because they know people will pay for the prestige of a minimalist life, still underpaying and overworking their employees.) But the difference in cost of living as eco-friendly of a life as possible is enormous, and ignores the very real problems that make environmental protection a clear issue of justice: Food deserts in rural and under-resourced communities, the racially-motivated locations of hazardous and pollutant factories, lack of nutritional education, monopolies on consumerism by big-box stores like Amazon and Walmart, just to name a few.

And even then, even if you have the money to invest in a minimalist lifestyle, 9 times out of 10 this requires a transition from a maximalist lifestyle through downsizing. Where does all the stuff you already have go if it doesn’t match your minimalist aesthetic? Well, if we’re not careful, to the landfill. See, by glamorizing eco-friendly minimalism, every brand on Earth is jumping onto the bandwagon and coming out with products labeled “green,” “clean,” “organic,” “natural,” “vegan,” etc. Their ads look just like that influencer’s home. If it’s a big company, their options are probably significantly cheaper than the small business they’re competing with. And yet it still all hinges on the temptation to have more stuff. This is “green-washing.”

It’s Earth Day.

Praise God for ecological leadership we’ve seen take precedence in recent years. Pope Francis’ landmark encyclical Laudato Si brought our ecological crisis to the front of Christians’ minds everywhere.

We have an ecological body. We have a planetary body. When we talk about Theology for Every Body, we must include this body, the body we are polluting and abusing. The first body entrusted to Adam’s care, before even that of Eve or their children (Genesis 2).

Maybe it feels a bit uncomfortable to call it a body. But isn’t it? With its veins, its air, its limbs, its water? Its pockets and cracks and bony plates?

From the moment I began Theology for EveryBody, I knew ecological justice would be a key component of its ethos. It must be. The Body of Christ necessarily includes the Earth, because it is from whence we all come and where we all end up. It is what we are made stewards of, a key component of so many miracles.

So, welcome to this series! It’s going to be an exceptionally fun and unique one, because not only am I going to write on ecological justice and theology (handing the metaphorical mic over to BIPOC leaders in these fields whenever I can) but I’m going to have Guy weigh in as well. That’s right folks: STEMforEveryBody crossover series!

Guy is a theoretical space physicist. His research centers on the interaction between the sun’s plasma particles and the Earth’s magnetosphere (did you even know the Earth had such a thing? A magnetic atmosphere? I sure didn’t!) This might not seem to have much to do with our climate crisis, but it does.

Guy is also currently back in night school studying public policy, as he prepares for a job transition into the world of science policy and advocacy. Issues of climate justice are nuanced, and are the responsibility of our federal, state, and local governments to navigate on the behalf of their constituents whose present and future livelihoods are immediately at stake. We’re long past imagining what the world will look like for our children’s children. Things are dire: The next 40 years will be make or break.

What’s more, Guy is passionate about learning about, advocating for, and supporting Indigenous education, leadership, land-management, and history. He has a fair bit of knowledge about and referrals to make to various Indigenous practices, leaders, scholars, traditions, and more. The conversation on ecological preservation and protection cannot occur without deferring to the ancestral knowledge of the people who cared for the land before we forced them off of it. The Church is explicitly culpable.

Guy and I have both committed to living as ecologically conscious of a lifestyle as we can. We’ve made numerous “swaps,” as well as larger dietary and lifestyle choices, that we look forward to sharing with you. Perhaps unsurprisingly: Minimalism is NOT a part of this lifestyle, and I’ll end up arguing that rejecting aesthetic minimalism might be one of the best things you can do.

I’ll also be sure and talk about ecological theologies. How can we see the Earth as God’s body? Is there such a thing as ecological sin? I’m particularly excited to explore “Franciscan Theology with my Non-Catholic Fiance.” Guy more than anyone else has introduced me to the Spirit of the outdoors, the holiness of flora and fauna, the necessity of breathing deep in fresh air, and respecting natural spaces through our own reverent activity.

If you only do one thing today to mark Earth Day: Read THIS book. Get it from your library, order it from your favorite small or used book store. Ashlee Piper’s knowledge is comprehensive, funny, easy to understand, and just might change your life. I’ve met her IRL and consider her one of my wisest and funnest Internet friends (DM me and I’ll show you our fun bathroom mirror selfies!)

Climate Change is not a myth. It isn’t disproven by dangerous, uncharacteristic temperature lows. It isn’t disproven by the saving of a few endangered or thought-to-be-extinct species or fewer plastic straws in the ocean. The only opinion we should have on Climate Change is that it is imminent. The only difference of opinion we should have on Climate Change is how we personally commit to fighting it.

I would say “we can’t wait to walk the path to a safer planet with you,” but it’s too late to walk.

We must run. As fast as we possibly can.

With urgent love — Madison and Guy

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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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