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Disability and Catholic Feminism: The Wide Reach of Ableism Narratives

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

Recognizing Ableism

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

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

The Intersection of Ableism and Feminism

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

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

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

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

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

“You can achieve perfect health on your own.”

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

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

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

The “Need” for Healing

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

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

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

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

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

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

Ableism and Our Own Bodies

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

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

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

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

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

I am.

I am.

This is my body.

This is my body.

It is good.

It is good.

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

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

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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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