This post is part of The Exponent’s #EqualAccess Series. Disabled voices rarely get a chance to speak for themselves, but this blog series seeks to eliminate the stigma that disabled people are less than, and need a representative to speak on their behalf. This blog series is intended to break stereotypes by gathering the voices of disabled individuals. #DisabilityExperience

by Madeline Williams

Below is an abstract painting by Keith Salmon, a visually impaired artist. Various shades and intensities of pinks, blues, greens, and yellows are blended together in a diagonal pattern.

If you think there are no disabled members in your church congregation, you are statistically wrong. One in four Americans have a disability (CDC 2019); however, they aren’t always visible. I look like an abled woman, but I have dysautonomia, an orthostatic intolerance disability and illness. At church, you might see me with my feet propped up on the chair in front of me. This is not about being overly casual or rebellious, but rather to access an essential accommodation that makes attending church possible. You might see me with a wheelchair one week, and without the next.

The week without a wheelchair does not negate my need for it the week before. These are not accommodations that you may think I need when you look at me; however, they are truly necessary to make church accessible. 

I will be discussing three areas of accessibility that are relevant in religion: physical, emotional, and spiritual. I hope you notice a theme: that we must always involve disabled people in these conversations. Paulo Friere said it best:

“Attempting to liberate the oppressed without their reflective participation in the act of liberation is to treat them as objects which must be saved from a burning building; it is to lead them into the populist pitfall and transform them into masses which can be manipulated” (Friere, 1972).

Freire, P. (1972). Pedagogy of the oppressed. New York: Herder and Herder.

More concisely, ask how we want to be involved, not just how we want to be helped. 

Physical Accessibility
Activity Selection. All church-sanctioned activities must be accessible for all individuals. Outdoor recreation, like camping, hiking, and sports, has been a historically common church activity, but if you cannot make those events accessible, do not plan it. Even parts of a city can be inaccessible. If the sidewalks are uneven, if there are no ramps into the building, if there is no paved concrete, those in wheelchairs or with other mobility difficulties cannot attend. If your thinking turns to, “This person doesn’t come to activities much anyways,” “They won’t feel bad missing one function,” or “It’s not fair that we can’t do this activity just because of one person,” then you are trying to justify your paradigm to avoid confronting an objective reality that challenges it. The purpose of church is to learn to love better, and you do not practice love when you leave people behind.

Allergies. Those who believe essential oils have medicinal properties through aromatherapy are quite often guilty of infringing non-consented treatment. By using oils in public, they are forcing treatment on those in their vicinity. Issues of consent aside, oils are extremely dangerous for individuals with MCAS, Mastocytosis, or extreme allergies. Anaphylaxis is a life threatening condition, and it can occur when an individual comes in contact with their trigger through touch, smell, or eating. The potential of a trigger increases with concentration, which make oils extremely dangerous. You can’t see when people have one of these disabilities, so assuming it is okay to use these products because you don’t think there is anyone in the building with one of these disorders is not sufficient. Additionally, there may not be someone in your congregation, but there could be someone who is in a different congregation in the same building at another time of the day; the effects of these products can still impact them hours later. There could also be a visitor. The possible scenarios in which these products can cause harm are vast, so it is imperative that they just stay at home. Perfume and highly fragrant lotions should also be avoided. 

It is imperative to briefly mention food allergies. When planning food activities, please document carefully nutritional needs, and ensure there are options for those individuals. Just as with mobility accessibility, if not everyone can access the activity of eating, you are contradicting the point of the activity to unify your community and congregation. You cannot unify when you restrict who can participate.

Vaccinations. When you do not get your vaccinations, you can pass on a disease to immunocompromised members. You can also pass it on to a healthy person who later passes it on to an immunocompromised person. You may not even know that you have a disease, and you may not know you have interacted with an immunocompromised person, because that characteristic is not visible. This can kill people. Get your vaccinations, including your yearly flu shot. If you don’t, you are selfishly blocking attendance access for those who rely on herd immunity. 

Sensory Processing. There are many disorders/identities that involves sensory sensitivities: autism, ADHD, migraine disorders, myalgic encephalomyelitis/CFS are but a few. Hypersensitivity can manifest in different ways. Sometimes it is discomfort with light; simply dimming the light would be an accessibility feature. It can also manifest as sound sensitivity; create a quiet place where they can still listen to meetings in a muted capacity, or even just have silence. Discomfort around crowds is an additional exhibition of hypersensitivity; provide a secluded place where the person can still listen to meetings, and create a smaller class in breakout hours. Sometimes an individual may only need to disengage for a few minutes and then they can re-enter the activity. Sometimes they may not be able to re-enter that activity, and its important to not shame or condemn them when they need that option. An important caveat is to make sure that the individual does not have to be alone to access the accommodation, unless part of that accommodation is the option to be alone. 

Trauma-Informed Practice. Trauma can be derived from various sources, pathways and effects which cannot be summarized sufficiently in the constraints of this essay. Trauma may be considered a disability, as it can severely limit the individual’s functioning and interactions with the world around them. Trauma-informed teaching is an accessibility feature for these individuals. Consent is key. Ask before touching them (this should happen regardless of trauma), ask before initiating a loud noise, ask before sharing stories or information that could be upsetting or disturbing and give content warnings before proceeding, ask before sharing personal information, don’t force individuals to answer a question or share what they aren’t enthusiastic about sharing. If the individual becomes triggered, they may not be able to eloquently express what they need because trauma uses up extensive brain space and reduces communication capacities, so be patient. Being calm and validating the emotions they are feeling will help them feel safer.

Interpreting. There are several domains and types of interpreting. The first is ensuring that hard of hearing or deaf individuals have an interpreter as needed for involvement in the meeting or activity. A second type of interpreting is making the language accessible for those with language processing disorders, dyslexia, brain fog, or intellectual disabilities. Simplifying language, multimodal teaching strategies, shortening instructions, and checking for understanding helps making learning accessible for these individuals. Ensure that reading out loud and speaking in front of peers or congregations is optional. Additionally, pictures must be described for those who can’t see them, and video clips must have captions for those who can’t hear them. 

Language. In past generations, whether accurate or wrongly assumed, it was taught that it was preferred by individuals to be addressed in what is called person-first-language: “woman with disability”. However, younger generations now communicate preference for identity-first language: “disabled woman”. Myself and others have created polls on social media to measure preference, and every poll has indicated 75% of disabled individuals prefer identity first. Obviously, personal preference matters most, but when addressing disabled groups generally, it is important to appeal to the majority preference. Many disabled people feel that when someone addresses them with identity-first language, it communicates that person is not afraid to confront the disability, thus normalizing and taking ownership over disability as a prevailing attribute of society. It communicates that disability is not something to be ashamed of, that it is not innately bad. 

Ableist language has been infused into the way we insult, joke, and characterize. It is important to continuously evaluate how that language might perpetuate stereotypes, or defend hierarchical structures. For example, dumb, stupid, retarded, lame, idiot, crazy, insane are all common ableist insults. When used, they communicate the reason someone is not as favorable or good is because they are disabled or have a cognitive deficit. Disability or cognitive deficits do not make a person better or worse. The actions are what count. A caveat to remember is that the person diagnosed with that disability can describe themselves however they want, they have a right to engage with that language in a way abled people do not. Additionally, we must find a balance in educating the unintended consequences of using these words as insults without attributing a moral hierarchy to their use. Language learners, brain fog, cognitive deficiencies, speech disorders can all impact the mental bandwidth required to put together a conversation. Reducing their word bank can make that conversation unfairly difficult. Educate and remind broad audiences about these boundaries, emphasizing the avoidance of perpetuating language moral hierarchy, but do not correct an individual because you do not know why they use the words they do. 

Gate-Keeping Accommodations Reduces Accessibility. Disabilities are expansive and diverse; I covered just some accommodations that I’ve seen lacking in my church congregations. The most effective strategy is to ask the individual what accommodations they need to access church activities in equivalent capacities as those who are not disabled. However, do not share private information without consent from the disabled person. I must add that it is important to not vet someone asking for an accommodation, and also to not decide who actually needs accommodations. You don’t know why someone needs to go gluten free; don’t shame them for chasing a fad. You don’t know why someone needs a wheelchair; don’t shame them for walking or standing. Some people may be too disabled to attend church, this does not indicate testimony or commitment deficits. In short, do not gate-keep accessibility; it is invasive, humiliating, and creates an environment of distrust. 

Emotional Accessibility 
Emotional Duality is Doctrinal. A common misconception in many church cultures is that enduring to the end, considered an important component of our mortal responsibilities, means that we suppress unpleasant feelings because we shouldn’t complain, that complaining negates our enduring. However, the practice of mindfulness urges quite an opposite tactic. It is important to pay attention to our feelings, take ownership over our experiences, and accept our circumstances. We wrongly think that sitting in grief, accepting sickness, or embracing disability creates extra suffering. However, Thich Nhat Hanh, a Buddhist monk, argues quite the opposite: “Conflict and suffering are often caused by a person not wanting to surrender his concepts and ideas of things” (Hanh, 2010). When someone accepts their disability, they are freed from trying to fight and suppress their reality and are empowered to make the most of the circumstances. Duality enriches our lives, feeling sad helps us understand joy, feeling pain helps us understand pleasure. When we suppress the bad, we reduce our capacity to feel the good. 

Redefining Hope. Another common theological concept is that to reconcile with an unwanted circumstance is to give up hope. However, Beth Berila, a director over and professor in women and ethnic studies at St. Cloud State University, suggests that taking ownership over feelings and experiences empowers instead of demoralizes. She speaks here in terms of anti-oppression pedagogy; however, it fits the same when you replace the word oppression with experience, trial, or illness:

“Accepting our responses is not the same thing as accepting oppression. Instead, it is a way of validating our own experiences and feelings, rather than perpetuating the violence of oppression by condemning our own reactions. Mindfulness enables us to gradually understand and befriend our experiences, which can actually serve as a tool to counter oppression. We can learn to meet ourselves with compassion, which can heal the deep wounds of oppression. When we can meet ourselves with deep kindness and compassion, we can also more fully empathize with others, which counters the separation and othering that uphold oppressive systems” (Berila, 2015).

Berila, B. (2015). Integrating mindfulness into anti-oppression pedagogy, social justice in higher education. New York: Taylor & Francis.

In short, accepting that I will always be sick is not the same as resigning to pessimism and defeat. It is not a lack of faith. I’ve learned to change my definition of hope: hope isn’t being sure of a certain outcome, it’s not waging a bet. It is being certain you can find happiness in any outcome. Hope is about making a beautiful life no matter what happens. Hope is about embracing the uncertain. 

Trust is Prerequisite for Vulnerability. A major tenet of emotional accessibility is making space for whatever emotion or experience someone is having, and to validate that experience rather than telling them to “Just be positive”, or “You’ll get better, I just know it.” Some people might feel positively about their disability or identity, and find it a beautiful part of who they are, while others may not. Emotional accessibility means to make it a safe place for people to be candid and vulnerable about their experiences without the fear of being delegitimized or invalidated. Check in with these individuals to ensure that they feel emotionally safe. But also remember, if the environment is not emotionally accessible, they may not be inclined to be genuine in their feedback. The following section includes more ways to evaluate and construct a healthier and safer environment for disabled people.

Spiritual Accessibility

“If you are whole you will argue: don’t the poor miserable buggers all want to be like me? Not necessarily, no. The arrogance of the abled-bodied is staggering… we’d rather be just like us, and have that be all right” (Kingsolver, 1998).

Kingsolver, B. (1998). Poisonwood bible. New York: Harper Collins

Permanency of Disabilities and Related Identities. Religion has a way of justifying bigotry through teaching that differences are temporary and constrained to mortal life. Sometimes, when people think a characteristic is impermanent, such as being constrained to mortal existences, they don’t feel the need to confront their discomfort. There’s much to unpack here, but we will focus on the circumstances in which an individual does not desire to surrender their disability in heaven, as well as what promising a “healed” body communicates to the value of a disabled individual’s body now. 

To say disabilities will be “healed” in heaven says that their accompanying rich and beautiful cultures will be erased. To be told I surely must be excited for a “better body”, communicates their resent for a part of me I cherish. For identities like autism and deafness, saying that will go away communicates physical superiority of neurotypical and hearing bodies. It diminishes their beloved social systems. It minimizes an important part of who they are, and something they don’t see as inherently broken. Communicating superiority of a non-disabled body reduces the perceived worth of a disabled body. Deciding what body is more favorable, “more God-like,” are tools that oppress disabled people every day. What happens after death doesn’t matter. What matters is how we view disabilities now.

Some people may want to keep their disability in heaven, where others don’t. In conversations of disability, identity, and illness, we must find a balance that certain circumstances are allowed to be unwanted at an individual level, while still maintaining that rejection of those circumstances in broader conversations of societal acceptance and inclusion is still unacceptable. Individuals are allowed to not want their disability. But systems can’t not want disability because that creates oppression and erasure of the disabled now, and for those who choose to keep that identity in heaven.

Reject Prosperity Gospel. During one difficult church meeting, several elderly members shared experiences that they knew their husbands were healed of an ailment because of their prayers and obedience. And just a few Sundays previous, I was told that I would have been healed if I had prayed more, by a bishop who didn’t even ask how much I prayed. This thinking is dangerous. In the smallest influence, prosperity gospel fuels self-esteem and shame struggles, and in the greatest, it can encourage scrupulosity, the name for religious OCD (obsessive compulsive disorder). We must reject that trials are prescribed to us in direct correlation to obedience. Sometimes illness is healed, sometimes it is not. Sometimes things happen just because it’s how it happened. When we teach otherwise, we isolate and damage the souls of those who have prayed for healing that still hasn’t come. 

Disability in Metaphor. It is quite common to use disability and illness as metaphor for measures of morality and righteousness; such as blindness, inability to use limbs, muteness, mental illness (evil spirits). Although they are not always literal equivalencies, their use in metaphorical language signals underlying ableism and resistance to reconciling disability and related identities just the same. For example, it is immensely hurtful to equate blindness to ignorance, because being literally blind does not make a person ignorant, but that teaching can unintentionally suggest otherwise. These comparisons are deeply ingrained in teachings, music, and the way we speak. You may wonder how I dare challenge a concept that is found in scripture. But, religious leaders are not exempt from being biased. Ableism was well documented in the New Testament, with clear examples of Christ condemning segregation and discomfort around disability. Christ’s radical call for inclusion was obviously a point of controversy, and religious leaders likely documented this through a flawed lens of unintended bigotry. Deconstructing previously conditioned bias while concurrently recording the work of Christ understandably resulted in imperfect scripture. This pedagogical tradition will take work to dismantle; however, the longer we refuse reflection and correction, the longer we are complicit in promoting inaccurate and harmful views on disability and its correlation to morality.  

Christ talked often about not forgetting the one. He told stories about going out of the way, even if seemingly inconvenient, to ensure that isolated and segregated sheep were brought back to the group. This teaching is applicable physically, emotionally, and spiritually. We must continuously evaluate and improve these three modes of accessibility to ensure we are loving as Christ loved. 

Bio: Maddie is a disability and chronic illness activist, currently finishing her thesis for her special education masters program. A part from her busy life of doctor appointments and homework, she enjoys music, plants, and the outdoors.

References

Berila, B. (2015). Integrating mindfulness into anti-oppression pedagogy, social justice in higher education. New York: Taylor & Francis. 

Centers for disease control and prevention [CDC]. (2019). Disability impacts all of us. Retrieved from https://www.cdc.gov/ncbddd/disabilityandhealth/infographic-disability-impacts-all.html

Freire, P. (1972). Pedagogy of the oppressed. New York: Herder and Herder.

Hanh, N. T. (2010). You are here: discovering the magic of the present moment. Massachusetts: Shambhala publications. 

Kingsolver, B. (1998). Poisonwood bible. New York: Harper Collins