The Spoon Theory: The equivalent of the health points or lives you typically get in a video game. Those with disabilities get fewer of them, and they are more concrete in number. The effects are serious and tangible for using too many spoons in ways unique to those living this way. Often, we don't just get tired, we end up in the hospital.
A Note To REaders With CI/D (Chronic illness and Disability)
Note to my readers with their own chronic illness and disabilities: This essay uses spoonie language. You can read The Spoon Theory if you don’t already know about it. I’m going to reveal how I’ve been working to undo my own ableism. I had internalized much of it and was previously ok with several things being said in church. Since working so hard to decolonize my brain, and to unlearn kyriarchy, my thoughts have changed. While I treat myself as more fully human, I am aware that I am also sensitized to what others say in new ways. Fighting to be fully included is exhausting. It takes spoons. And I cannot un-learn or un-experience what I know. If you, as someone living with CI/D (chronic illness and disability), do not have the spoons to think deeply about this, and to fully see the ableism in the world around you, skip this post. Because I’m new to being aware of it myself, and it takes lots of spoons. In some ways, while I liked myself less, it was easier not to see the oppressive world and want to fight it. I liked the world more before I was paying attention. Now, I have fewer spoons, but I like myself and my body more, and see myself as more whole.
If You're Out of Time, Here's the Point
If this article is too long for you, I’ll cut to the chase. Value the differences in how we worship. Value differences in posture, position, and movement. Don’t assume the best/right/only way to worship is YOUR way. Examine your internalized ableism and value structure, if you can. There are many references at the end of this article to help you accomplish this. Words used in worship communicate what a congregation values. Keep reading for words used in worship that communicate there is really is no room for people who worship differently than you. In online clergy spaces, we’ve been talking about words to use to ask people to stand during worship. Don’t be militaristic about it, it's not about that. Don’t not listen to person in front of you in your congregation because of a blog post. These are my suggestions based on my own work and progress around ableism and language in church. I do this knowing that until our guides, rubrics, and patterns in worship are changed, we’ll never be fully inclusive.
However, please do not comment until you’ve read the entire article where I share some of my own deep pain. Unless you hear my pain, or are living with your disabilities, please do not argue that your way is best or act like you have nothing to learn.
Now you have some better ideas about how to live in our present moment,
so change your language by examining your values.
If You want to know the hows, whys, and process, keep reading
I know things in the world and church are hard right now. I know that Pastors are weary and that the thought of adding anything more to our plates is stressful. One new place of pain, one new complaint, one new way of thinking about how you do things. I get it; I really do. I used to say that listening to the pain of People of Color, people living with differing abilities, and suggestions about how to lead worship in less oppressive ways was nice for others, for other congregations, for other Pastors, and not for myself. My congregation and I did not have the energy to change these things in our worship. But, in order to do that, I had to ignore the pain of my siblings in Christ in order decide that my context was the most important. I’m learning to decolonize my own brain, too, and to listen when I can to those who have the most hurt.
Today, here on my own blog, I’m asking you to open your heart and listen. Maybe bookmark this and come back to it later if today isn’t the best time. I honor your boundaries and ask that you make time to read this later.
Here are three more definitions for you. I easily got blackout Derailment Bingo when previously trying to explain my position to clergy colleges. Hence, this blog post.
My Thoughts Changed
Here’s why I now see ableism in words that I previously thought were fine:
Saying “please stand/rise as able” still centers “being able”. When I hear that in church, I hear that the people who are “able” are the most valued. I’m no longer content to be thrown a bone that makes me happy a worship leader knows I exist; I now want to be included as fully human, and to not have “being able” thrown in my face all. the. time. The more I hear the world “able” in worship, the more I know what the congregation values– and know that it isn’t, and won’t be, me. Please stop centering “being able” as an indication of worth or participation. That is literally the definition of ableism.
Our worship service was written by able bodied mostly white or Middle Eastern men, basically from the beginning of Christianity until now. We make little revisions every so often, but we never change the whole entire structure to something like this. Simply the structure of sit/stand/kneel, sit/stand/kneel assumes that being able to do certain movement is vital for worship. And on the flipside, the structure implies that those who can’t follow along lack faith and worth. Asking me to have to rise in spirit when my body just can’t communicates that “rising” and “lifting” and “standing” are what matters in worship. What if I get into a place where those things are impossible for me all the time, not just some of the time?
If you are interested in the problems of mind/body dualism from a feminist perspective, you can read my writing here. Pay attention: Jesus cared about bodies. He touched his disciples' dirty, sandy, dusty feet. Jesus hung out with lepers. He wanted health, healing, and wholeness for all. The church does not seem to know this: please see this article. My personal reality is that if we didn’t have money in a IRA we could take out to pay for health care, I’d spend my life in bed on disability. I need a whole team of specialists and medications to keep me functioning, and in our capitalistic system, that costs money. Jesus healed so many, I believe he wants healing for all bodies, and whole people.
I’ve spent so much of my life hating my body. Jesus healed that. Around the communion table, I see a Jesus who cares about bodies eating, being whole, being in community. If God didn’t truly care about human bodies, why did God want one? I have so much comfort for pain and suffering because Jesus knows pain. He suffered with the flu, stubbed a toe, had dirty diapers, nursed. What kind of God loves us so much as to want to know what it is like to be with us in all ways?
I’m not interested in my spirit being valued over my body. I used to be, but that just caused pain because it caused me to ignore my body. I didn’t take care of it and only concentrated on spiritual things. Spiritual things meant I rarely slept or ate. Sure, I was and still am good at lots of things, but I also have a habit of running my body into the ground. to fulfill the New Testament Greek mind/body dualism paradigm. The Greek philosophers had this idea that our bodies and spirits were separate from one another. I rarely hear Jesus say things to support this worldview, but Paul sure writes about this a lot, and it is what I absorbed and learned growing up. I’d like to be whole person. (I don’t believe God caused it, only that God’s job to help good, healing, hope and New Life come with it.)
As these conversations about what to say when asking people to stand in worship were happening in several places, my favorite answer came from my friend Kelly Colwell:
"I try to say 'please find a posture of reverence, however that works for your body,' or 'please find a posture that supports your singing/praying aloud,' if it's a song or prayer. But that works in my context because I've preached about it and explained it a bunch of times. If there are newcomers who haven't heard my spiel, I will say 'you are invited to kneel if comfortable or find a posture of reverence that works for your body,' or 'you are invited to stand if comfortable or find a posture that supports your singing/praying aloud.'
What do I wish?
1. Share this post!
2. Change your worship language. If you’d like a personalized newsletter article for your congregation to explain your change in worship language, please purchase here.
9. Use me as your sensitivity reader for ableism. As a bonus, you can also get regular editing for grammar, writing style, organization. Sermons, articles, whatever you've got.
1. Twitter Hashtag #disabilitiesinchurch
2.Shannon Dingle created the #disabilityinchurch hashtag and this article by her is a big deal and educational.
3. Follow Sharon Dingle and read on her website.
4. Follow Erin Human and read on her website.
5. Twitter hashtag #actuallyautistic (If you are alltistic (not autistic), DO NOT USE this hashtag. You can #askanaustic if you are invited into a conversation.)
6. Follow Disability and Jesus
7. Follow Erin Human on Facebook. She writes about being aware of and curing ableism.
8. Read The Disabled God: Toward a Liberatory Theology of Disability By Nancy L. Eiesland
9. Read this statement by the Autism Self-Advocacy Network. It explains many things about how to be a good ally. Read things written by people with disabilities. Do not do the Autism Speaks puzzle pieces, that org is not run by Autistic people, and often leads to the deaths of Autistic people with their ableist ideas.
10. Read My Needs Are Not “Special” -by Michelle Sutton.
11. Read #SayTheWord, Not “Special Needs” -by Erin Human
12. Remember people with disabilities killed by their own families by learning at this site.
13. Nick Walker’s “What Is Autism” seems to be the most widely accepted description of autism among #ActuallyAutistic people.
14. Autistic Families International (an organization run BY and FOR autistics) describes autism similarly.
15. Consider reading The Real Experts, reading by autistic people for parents of autistic kids. It'll give you a good look into the lives of those with all disabilities.
16. One more definition. You can read more here.
Language: Identify first or person first? Disabled person or Person with a disability? Autistic person or person with autism? Deaf person or person who is deaf? Different people and communities prefer different ways of dealing with this. Language is like pronouns. Ask people what they prefer. Many Autistic people and Deaf people communities prefer identity first, in my circles of chronic illness and disability, person language is preferred.
1. If you have disabilities other than mobility, what are other ways worship could make more room for your or be more inclusive? (I shared some of my ideas here.)
2. What questions do you have?
3. Why do you think these things are hard to hear?
4. What will it take for the church to become more inclusive and welcoming?
5. If you are qualified to answer, what did I leave out? Share how you're qualified, please.
Pastor Jess, Author
Loves Jesus, Loves and Hates the Church at the Same Time, Calling Us to Honestly, ELCA Pastor
This work is licensed by Rev. Jessica A. Harren under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.
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