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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disability

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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