For those of us with neurodivergent and physically differently abled bodies, worship can be a true challenge. My family - made up of two parents and one child - includes many physical and neurological differences. Sometimes, the idea of coming to worship is so exhausting for us, we simply don’t go. The adaptations we must make to simply belong and participate, the stuff we have to take with us, seems overwhelming at times. Here are five things I wish that churches would stop doing - and five things I wish they would start doing.
1. Stop making everyone do things in only one way. Stop valuing conformity in worship. I don’t just mean that you make it ok for some people to sit if they are not able to stand. I find that to be horribly isolating and like I stick out like a sore thumb. Also, since I’m young, the comments I get for sitting during worship, even as a pastor are terrible. “How could you disrespect God by sitting during the gospel?” “You look fine, you’re young. If I can manage to stand with my arthritic knees to worship, you can, too.”
2. Stop making hurtful comments. For example, see above. You do not know and cannot see what it is like to live in the bodies and brains of my family. I am in change of my own joints, and my own energy level. Consent culture applies to able bodied people and to those who are dealing with chronic illness and pain for the first time in their elder years. I’ve lived in chronic pain every day since I was 13 years old. I know my limits and my needs. They are likely very different from yours. I also have no expectation that my pain will be over in 10-20 years when I go live with God. I likely have many more years of chronic pain on this earth, and if I want to do things, I can’t just suffer through until I die.
3. Stop ignoring the many people who ask you to turn the music down. My body can feel like I’m in a cement mixer if the organ is all the way open, or the speakers are blaring. I have yet to find many people who like the music loud. I find a few band members, and a whole bunch of people who refuse to listen and pretend they are helpless in the situation.
4. Stop making assumptions. You have no idea what life in my family is like, how hard we must work to appear “typical”, how many extra things we have to do to get out of the house in the morning. (Three people need meds, two of us need different kinds of therapies, it takes us a long time to move well and wake up our bodies and brains.) I don’t care if you got your kids to church on time when you were a young, tired working Mom. I don’t care if your neurotypical child sat perfectly still for the entire service. Can you make room for me and my story? Can my life experience be different from yours, and just as valid?
5. Stop confusing “cure” and “healing”. Stop preaching at me in ways that tell me that I count less, or am less whole because I am in a broken body. Would I want Jesus to come up to me, lay hands on me, and heal me of my pain? Maybe. Sometimes. But living my adventure with chronic illness and disability that includes my spouse and child can be life-giving, too. We are kinder, more compassionate, less judgmental people. Don’t tell me that my goal in life should be cure. When things are rare and genetic, there is unlikely to be cure. Can you preach on a healing story in the Bible that values restoration to the community and healing over the physical or emotional thing being completely gone? What if the demons were not the mental health problem, or what if being blind wasn’t really the issue? What if the issue was that the community had no places for those with demons or those who are blind? What if the point of the stories are to teach us to make room for all kinds of people in the kingdom of God? Honestly, my life would be a lot less pain if the world were set up to have room for me, and I would wish for a cure less often. I live a happy and whole life with my chronic illness and disabilities. Can that be ok with you, church?
1. Letting people worship with their bodies however works for them. Make room for chaos. There are days that my brain and energy levels are fine, but I can’t sit or stand. I wish for a recliner in church, or even the ability to lay on the floor on pillows in the front. I bet there are others, of all abilities, who would like the option to sit on the floor, stand, not stand, dance. Can adults color during worship? See, if everyone can participate in the best way for them, while creating worship together, then I’m not singled out as the only person who can’t stand that Sunday. Not everyone in church need to know if I’m having a hard day. They often make comments like those above and ask me about it later.
2. Inviting all. If you are going to do a creative worship thing -- at a conference, in your church, always offer at least two ways of participating. Especially if you’re doing a really big thing like standing for a long time, doing yoga, or painting a huge picture together, just letting people know what you’re doing can make a huge difference. If a conference, for example, had just collected a list of those who might need accommodations, and sent us an e-mail ahead of time with the big plans, I could easily tell them the one or two adaptations that would make it possible for me to participate. At one conference where I was on crutches, I just needed them to move a chair before worship. Instead, I was left out of several parts of the service. Why didn’t I move my own chair, you ask? I was on crutches and needed my hands to walk. Also, because sometimes it would be nice to be cared for by the church instead of treated as too much work. Or as requiring too much communication.
3. Listening. I know my body, I know my brain, I know my stories. I know the bodies and brains of my family. Church, can you just believe me? There are so many ways I’m told that I don’t count or am too much work or that I’m not believed about what I need to fully participate. Find the people in your church with differing abilities, ask them what they might need. It might be as simple as a cushion on a hard pew.
4. Talking about human beings as the whole people God created us to be. Part of my problems are because I learned to shut out the voice of my body for the sake of the Gospel. How often in church do we deride the flesh things and concentrate on the spiritual things? I learned to hate my body, which helped me become sicker for a longer period of time. God didn’t create us to shut down parts of ourselves. There are other interpretations of Paul’s language around that. Look them up. Find them. Share them.
5. Learning. For all things, ableism included, the biggest thing you can do is seek out the stories of those different from you. Read stories about the lives of our trans siblings, our siblings of different colors from us. Learn about the lives of those with different abilities, or the pain of those who are shut out of society, and often our church. The stories are there in books, blogs, youtube. Actively look for those stories and share them. You might be surprised about how you will find the kingdom of God when you look there.
Thanks for reading my story. I’d love to hear in the comments your experiences of church. If you have chronic illness or disability, what do you wish churches would stop and starting doing? If you are typical, or temporarily abled, are there parts of this that resonate with you for different reasons? If you have come to chronic pain as an elder adult, and you have permission to think about church outside of conformity, what might make it better for you?
What is normal, or typical, in some worlds is not normal in mine. My first sprain was 31 years ago, at the age of 7. Crutches and braces have been making my life work since then, and I’ve gotten good at getting doctors to find the best braces for whatever body part needs more support that day. What people don’t understand is that before I learned to love to my braces, I just stayed home when I was injured. I took myself out of life. I didn’t want to be out on crutches, or in braces. Or, if I did go out, I had a hard time engaging through the pain.
That was before I learned that my braces and crutches make my life whole and happy and less painful. Braces give me life -- the ability to be out in the world in livable levels of pain. If I can participate in an activity -- shopping with my family, going out to dinner, taking a class, playing outside with my son -- in less pain, why wouldn’t I want that? I am more present for others when I’m in less pain. However, I didn’t always know that was possible.
I had to come to terms with my need for braces. In my college and graduate school years (in my early 20s), I would often dress to hide my braces. My clothing choices were dictated by which body part needed support that day, or which part was injured. Sometimes, when I especially vain, I’d forgo the braces all together -- but then end up spending the next day in bed hardly able to move. Trying to hide who I am and how my body works only brought more pain.
There was a point when I grew out of that vanity. I’m not sure when or where or how, but now I use whatever I need to enjoy or to participate in life. I’ll carry pillows into restaurants, travel with ice packs, ask for an extra chair for my feet, and/or take my crutches if I think they’ll relieve more pain than they will cause.
Know what I discovered? When I am just me, and claim all of who I am instead of fighting it or hiding it, I’m better. I can do more things, I can live more life, I can give more to others – time, attention, energy, joy.
I learned to let the vanity go, and replace it with claiming what I needed, which brought me and all those around me more joy in life. I am less dependent on others this way, too. I don’t often get into trouble (unless it is a new injury that just happened in the moment) where I’ve been out too long and need to limp home on someone’s arm.
My braces are almost part of my body now. My spouse jokes that he got a wife with an exoskeleton. If you, like me, also need an exoskeleton to enjoy life, claim it. As you can see in the picture, my new space age blue brace matches my wrap and jewelry to a degree. Before, I would have worn a floor length skit, but today I wear what I want, and use the braces in all their glory to be fully present in the world. If you, like me, are somewhere on this journey of learning to claim the things you need in life, this is your invitation to move forward, knowing that you’re not alone.
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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