[I found this image on Kerry Magro’s blog on a piece entitled, What I would Like People to Know About Having Autism and an Invisible Disability. I recommend reading it. Image Description: White background, black text. There is a phrase at the top which reads, “Not all disabilities look like this,” with an arrow pointing to the traditional disability symbol of someone using a wheelchair. There is a phrase below which reads, “Some look like this,” pointing to symbols of three people. Two are adults with a child in the middle holding the hands of both adults.”]
As I’ve shared throughout the week, Disability Activists Mia Mingus, Sandy Ho, and Alice Wong have recently launched a campaign on Twitter, Instagram, and Facebook called #AccessIsLove, framing accessibility as an act of love and a priority for moral inclusion — not an afterthought, not a burden, and not an inconvenience to be avoided. Throughout this week, I am writing about issues of accessibility in churches, and as I do so, I want to spotlight the perspectives of disabled people. (I also recommend following them on social media.)
Not all disabilities are visible.
Let’s say that again:
Not all disabilities are visible.
Many people know this, of course, but… culturally, people sometimes have a very narrow concept of what disability is, how it functions (of course, there’s a huge spectrum of how disability functions in people’s lives!) and what gets to ‘count’ as disability. It might seem as though this is merely a question of definition, but if our understandings are too narrow, we can erase people’s experiences and identities, and we are much more likely to be extremely narrow in accommodating the needs of people in our communities. This can happen, and does often happen, within the life of congregations. If we want to create churches that are fully inclusive and accessible, we should think about invisible disabilities.
When we ponder invisible disabilities, what are some important things to consider?
— We cannot tell whether someone has a disability simply by looking at them.
— Among other things, we are talking about chronic health conditions, pain disorders, mental health conditions, auto-immune disorders, intellectual disabilities, learning disabilities, sensory processing conditions, and more (again, let’s not be limited).
— People have a right to talk about their experiences, conditions, and identities in ways that are unique to their choosing. Some may identify as having a disability; others may not. They may use different language altogether. We should follow their lead. Some may use person-first language (“I’m a person with _______; here’s an example) and some may use identity-first language (“I’m a(n) ______ person; here’s an example). Many Deaf people capitalize the ‘D’ in Deaf to assert pride in their identity and being a member of a community that is also a culture. In short, we should follow the lead of people and mirror the language they use. If we are unsure which language people use, we can ask.
— We need to take care about how we hold and share people’s health information: 1) People have a right to share that they have a health condition or invisible disability, and people have a right to keep it private. It is their choice. 2) If someone shares this with us, it does not then give us liberty to talk about it with others without their permission. And… 3) we should not speculate in conversation with others about whether someone has a disability or a health condition. 4) We definitely should not ‘diagnose’ someone in conversation with others. In more than one congregation, I have watched people presume to ‘diagnose’ a person — and wrongly — when they made an assumed conclusion about someone’s physical or mental health and shared this ‘conclusion’ with others. People may also attempt to ‘diagnose’ a traditionally stigmatized condition upon a person in order to dismiss that person or create suspicion about that person. (I was also once on the receiving end of this experience. It was horrible.) Let’s be clear about this: It’s ableist.
In addition to these points, as we consider how to have a more inclusive and accessible church for people with invisible disabilities, let’s ponder how some larger cultural frameworks and misunderstandings might impact people in our congregations also.
I’d like to spotlight another helpful video from Annie Segarra. She is an ambulatory wheelchair user — meaning that she can sometimes stand or walk for short amounts of time. She names the ways that disabled people are sometimes accused of faking their disabilities. This happens when people have a very narrow understanding of what disability is and presume to confront others. This can even lead to incidents of verbal and physical abuse.
(This week, I’ll also be compensating Annie Segarra with a donation for the use of her videos. She offers educational and emotional labor in teaching us. She also makes a living this way. Did you learn something? Want to join me in making a donation?)
And here’s another video from one of the hosts of Tru Faces on Youtube who is visually impaired and has had painful experiences of being accused of faking her disability.
How might these dynamics impact people in church communities? Some questions for us to consider:
Would someone with a disability placard be accused of faking their need if they use one of our designated parking spots and then walk unassisted into our church building? What if some people in our churches aren’t utilizing this need currently out of fear of what others might say?
If someone tells us that they need greater access, different placement, or particular technology in order to see or hear more clearly in worship, will we believe them and take that need seriously?
If our ADA non-compliant church buildings have steps with no lifts, will a person with a pain disorder feel comfortable in telling us this is inaccessible for them, or will we assume that’s only true for people who use mobility aids? (It also matters for people who use mobility aids!)
If someone tells us that they have particular dietary needs, will we prioritize those? In community meals? In communion/eucharist?
If we use particular kinds of language around food or fitness, might we inadvertently exacerbate someone’s eating disorder?
If someone tells us that our language in sermons or liturgy is triggering of past trauma, will we honor that and try to frame things differently next time?
We should also keep in mind that certain health conditions additionally face a great deal of stigma in our larger culture. This may lead to some people keeping their invisible disabilities private and hidden.
Again, it is always someone’s choice to share or not, and that should be honored. But if we want to be fully inclusive and accessible in our churches, we should ask ourselves how health and disability stigma might be present in our own congregational cultures too. Might this lead to people hiding their needs for accommodation? Could those dynamics lead to people feeling isolated even in the midst of community gatherings? Might this mean that people might stay home even if they’d love to participate in worship services?
A Story That Sits With Me
If you follow this blog, you might remember that I had a very meaningful experience meeting Kurt Eichenwald last November. He has written a powerful, personal memoir called A Mind Unraveled about his experiences living with epilepsy.
I also recently heard him tell a story about a conversation he had with others at a book signing event.
He was addressing the people there and asked, “How many people here have epilepsy?”
There was a pause, and then one person raised his hand.
Kurt Eichenwald then said, “Hi, my name’s Kurt, and I have epilepsy. How many people here have epilepsy and have never told a single person in your whole life?”
Six people raised their hands.
Church Cultures: Hidden Conditions, Hidden Needs
As a person who grew up with epilepsy (which later went into remission) this story above did not surprise me at all, and yet I found it to be so telling. It makes me wonder how many people with culturally stigmatized conditions and invisible disabilities are present in our congregations but keeping their experiences and needs hidden?
(Sidenote: 1 in 26 people will have an epilepsy diagnosis at some point in their lives, and epilepsy is more common than autism, cerebral palsy, multiple sclerosis, and Parkinson’s disease combined. I can nearly promise you that people in congregations currently have or have had epilepsy. Can they tell you?)
And what about mental health stigma? It’s a huge cultural force. How many people feel as though they are hiding in the shadows? Even within our congregations?
If health stigma exists in these directions, in broader culture, and within the life of a congregation, can members feel comfortable disclosing their conditions, invisible disabilities, and particular needs to one another? Can pastors and other ministry leaders disclose their conditions, invisible disabilities, and particular needs to their congregations? Or will there be challenging consequences for doing so?
These are crucial questions for accessibility. And Access is Love.
Thanks again for reading. We’ll have two more posts in this series this week. Anything you’d like to add? Feel free to share in the comments.
— I also want to recommend this powerful piece by Rabbi Ruth Adar, entitled, Hiding My Disability Kept Me From My Fullest Life.
— I also want to recommend an episode of Alice Wong’s incredible podcast Disability Visibility. Alice Wong is a disability activist and one of the initiators of the #AccessIsLove. That episode is called, “Disabled Fakers.” In that episode, she interviews Doron Dorfman who has done research on the “fear of the disability con,” and discusses how that impacts accessibility, an understanding of ethics, and disability rights in law.
— This post is part of a series. Feel free to check out the other pieces here: