​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? 

I woke up this morning to find that I had been automatically logged out of Facebook and Facebook messenger overnight.  When I tried to log-in, it said that someone had reported me for not using my real name.  My name is Jessica Harren, that's what's on my Driver's License, and what I used on facebook.  I have sent in my driver's license.  There is no time frame in which facebook will respond.  A friend reported that they could not even find my page. 

I was in the middle of a bunch of messenger threads, and also important conversations.  Myself and others in my community are trying to organize a class, and I am now unable to answer any questions on facebook messanger or in my groups about this class.  Please comment below on this blog post with your questions.  I promise I won't ban myself from my own website.  

I spent yesterday showing some racism that happened in my Nextdoor Neighborhood site.  I had also advertised the Safety Pin Box training inside several groups.  One person was in both groups, and I received a facebook notification e-mail this morning (that I can't respond to) that she commented that she is very angry with me.  I do not know who reported me for not using my real name.  I do know that this is a normal tactic of racists online who think that honest conversation about race somehow hurts them, and that they have the entitlement to not be offended by life.  The problem with this view, of course, is that it ignores that People of Color in our country never get the option to not be dehumanized for the color of their skin.  They have to live with racism and the casual comments that let them know they are not as human as others every day.  White fragility is a thing. You shouldread about it. 

So does my Mom.  She's worried about me and my safety.  So do my friends, although if you're reading this, you maybe are one of those.  Some people are feeling righteous anger on my behalf, some people think that I have to take care of myself and not put myself in these situations.  Some people worry about me getting too tired, or burnt out, and that I need to take care of myself.  Some people wish that I wouldn't stir things up because of the cost to my health and family and personal life.    You are in good company.  

Please save those feelings for the Black women, especially, but all other People of Color whose lives are impacted every day by racism. They lose health, too.  And family time, too.  The five year old Black children who are afraid their parents will be killed by the police, or arrested for speaking up.  The Black women activists who have entire plans they can put into place when they get blocked from things, because it happens all the time.  As tired as I am of people not believing me that racism is real and kills people, I've only just come to the fight for Liberation of All.  I've only just started speaking up.  Black children are not believed about how they are treated differently in stores and by teachers from the time they are young.  We have to get honest, country.  We have to start believing the stories of Black people and those who try to amplify their voices.  

Lots of things!  
First, donate to Black Women Being so that the women who fight for Black liberation every day and also lose economic privledge while they do so can eat and pay their rent and feed their kids and fund their organizing.  
Second, send me an e-mail, contact form, or text if you have my cell.  I'm lonely being cut off from the place I have most of my friends and conversations.  Facebook has been everything to me in my life of chronic illness and disability because I can have friends without needing energy to leave the house or hold up my own head.  
Third, send a message to any other People of Color who are organizing and are activists today just to say hi and that you support them.  
Fourth, if you are not already getting things from Safety Pin Box, you should.  It'll help you learn what you need to learn. It'll help you create a world where this doesn't happen to me, or to any Black activists, either.  They have a one-time Ally Backpack, a one-time Kid's Box, a subscription, and you can join the training here in the NW Suburbs of Chicago if you're close.  
Fifth, follow some Black women on Twitter.  If you go to my page @pastorjess615, you'll see that I follow lots of them.
Sixth, be sure to share DiDi Delgado's article about racism on facebook, and then share my article, too.  It is horrible and part of racism, but sometimes while women are believed more.  Please share both articles together.  My voice is not the most important, and I hope it can help. 
Seventh, support Black authors on Patreon like DiDi Delgado, Sherronda Brown, Ijeoma Oluo and also read (and fund) The Establishment on Medium. 
Eigth, have a fun conversation in the comment of this blog, and share links to more articles about the truth of racism.  

What I say is much worse for Black activists.  Be aware of that, and look at the section above to know how to support them.  

1.  Is is driving me to distraction to not know what's going on, and who is saying what, and my fears about white supremacists taking over some of my posts and comment threads.  This is where I have to trust my community and friends.  So glad we don't do this work alone. 
2. My stomach and head kinda hurt.  No wonder health is often worse among those marginalized. 
3.  For the most extroverted person God ever created, being silenced is no fun.
4.  Taking the risk of being silenced and living with a small bit of the reality that Black activists face in worse ways is part of being anti-racist, I think.
5. I can't do my other, paid job because of this block  A woman from church and I were on messager about a really cool event our church is putting together (which I can't even link you to, because facebook is the church's only website), and she can't see messages from me or download the flyer I sent her.  Thank God I already had her e-mail.  I think facebook is confused about its role in the world.  See article in Step 6 above from Ms. Delgado for more on racism in facebook.  
6.  Racism is a real problem, and silencing those who speak about it only leads to more lives being lost.  

Mostly here I'm talking to white people, especially white clergy of white churches.  When I say "we" I mean white people.  ALL of us, including myself.  This stuff is hard, and it can hurt badly to be self-reflective.  I know, I've been doing it for a few months thanks to Safety Pin Box.  I've cried many tears.  If you can open up a little and hear what I'm about to write, perhaps I can save you some of your own tears.  
So there's this stuff going down in Charolettesville right now.  Something like 2,000 people are marching because they hate People of Color. They are wearing shirts with quotes from Hitler and carrying Natzi flags.  People are scared.  The KKK is alive and well in the US.  Anti-blackness is alive and well in the US.  I know that we don't want to be complicit.  I know that we really, really want to say #notallwhite people.  I know that we want to be one of the good white people.  Today, that will be hard.  Today, what we can do is admit how we've been part of the system, part of the silence.  Today, we have to admit that for some reason, 2,000 people think that it is ok to dehumanize others in this way.  Where haven't you spoken up?  Where in your body are you afraid to speak up?  Can you imagine living with this kind of hate that gets communicated to you in subtle and not so subtle ways every day of your life?  Can you imagine knowing that your child might die because of the color of their skin?  

I know that I can't because it'll never happen to my child.  However, I do know that I have to do something.  Jesus demands I do something.  

I've written some possible excuses for White Christians not speaking up tomorrow.  I've also written some answers.  I hope you can add to this convo in the comments, and add more excuses, or help for one another.  Let's stop being the kind of church that sits by and lets hate happen without speaking up, ok?  Please?  Jesus demands it.  

Let's look at some possible excuses for not condemning hate in #Charolettesville in your sermons. 
1. I might lose my job. 
     To which I say: Yes, you might. You might also lose your soul if allow white supremacy to reign in your church. How can we help you learn to say this in ways that won't lose you your job? Blame Jesus? Also, there's are lots of Black people who lose and can't ever gets jobs because of the white nationalists, so there's that, too. Is your right to live a life and have food and rent more important than theirs? But I also think you can find words that will keep you safe. Any words at all help. 
2. I'm scared. 
     To which I say: So was Peter in Matthew 14:22-33, the passage for RCL lectionary tomorrow.  
3. I don't know what to say/how to say it. 
     To which I say: Then let's work together! 
4. I want people to like me. 
     To which I say: So do I, but I care more that Jesus can be proud of me. 
5. I might say it wrong.
     To which I say: That is still better than nothing.
6. I don't have all the information I need to speak up. (Courtesy of Vicar Ian McConnell)
     To which he says: speak to what you DO know, then. Namely, that if we believe what we say we believe, we will not let white supremacy co-opt the gospel message of God in Christ.
      To which I add: Let's figure it out together.
   I also add that the ELCA synod there made a statement, so there is information.  http://www.vasynod.org/virginia-synod-elca-statement-august-12th-rally-charlottesville-virginia/?fref=gc​
​
7. My congregation just had the matriarch die or a huge conflict. I have other things for my community, they can't learn anything right now.
     I suggest, "I know that this thing is going on with us, and that's important, and we're hurting, and that's ok. I also know lots of People of Color who are hurting deeply because of the white Christians in Charlottesville who would like them dead. I want you to know that Jesus isn't ok with this, and we shouldn't be either. Hate causes more pain. We'll work together on understandings this more in the coming weeks when we have more space as a community. Just hear now that we will deal with it, and that is it not ok for Christians to wish for people to die because of the color of their skin. Now onto our regularly scheduled sermon."

​What else?  Post in the comments.  Thanks!

​8.  I'm so overwhelmed, I don't know what to do.  
     To which I say, use this litany, read this blog post, follow the hashtag #charolettsville on twitter, follow #decolonizelutheranism, and subscribe to Safety Pin Box.  Pick one, or all of them, and then be sure to say in your faith community during your message that you don't know what to do, you feel overwhelmed, and that you're trying, and that you think Jesus wants the church to try, too.

9. My congregation doesn't have people of color and this stuff just isn't on their mind. They don't see racism, it doesn't happen here, etc.  (Courtesy of Pastor Becca Ajer at St. John's Church in Littletown, PA).
     To which she says: There may not be people of color in your pews but racism affects all of us. Show them how it hurts us all. Show them that our siblings of color are part of the body of Christ and when part of our body is hurting and dying, we are called to speak out on behalf of God's people. 

I am so honored to have been invited to join Action for a Better Tomorrow for Everyone group on Wednesday, August 9 to talk about my journey of anti-racism, the joys and hardships, the back steps and forward steps. I we had an open and honest discussion that allows us to find out where we're at personally, and what we can do next.  Below is the link to ask me about doing a similar event for you, since this one has passed. However, the intellectual and emotional labor of the Black women who taught me nearly everything I know cost them personally quite a bit.  Please support Black women doing liberation work now as part of my presentation.  
Event Hashtag is: #abteally

1. Article By Marissa Jenae Johnson
2. Article by Pastor Jess
3. Stages of Racial Identity Development
4. Ally Backpack
5. Blog Post on Why I Love SPB
6. Safety Pin Box Subscriptions
7. Safety Pin Box Kids -- Only Till August!
8. Mamademics Curriculum 
9. T-Shirts, Black Lives > White Feelings and Raise Better White People
​10. The Dock Bookshop -- Black owned.  Buy especially books on racism here.  
​11. Derailment Bingo

1. Interracial Jawn
2. White Privilege Podcast
3. Black Guy Who Tips

Mainstream media is usually run by white people.  It can be hard for Black women to get jobs as journalists, even when they are very talented writers and deserve those jobs.  We can help mitigate the effects of racism on journalism by supporting Black women writers on Patreon.  

1.The Didi Delgado
2. Sherronda J. Brown

In order to get a copy of the power point presentation, please use thecontact form.  After I receive your form, I will send a message back to your e-mail saying "Receipt?" You may then e-mail back a screenshot or forwarded e-mail of your donation to BWB of at least $5.  I learned from so many Black women for free, and I will not profit off of racism any more than I already have as a white person.  A donation to BWB gets you a copy of the presentation, regardless of if you attended the event or not.  

Please comment on this blog post with 1. a name for yourself, 2. favorite ice cream, 3. your questions, and 4. an honest sentence about your fears around confronting racism.  Thanks! 

Here’s what I learned in my Week 2 journey of #decolonizeyourspirit. Click on the two links above to see the first and second installments of the series.  Also, if you wouldn't have gone into a Speakeasy during prohibition, this might not be the place for your hang out online.  Things get really honest here.  

Note: The word “we” in this article refers to white people, mostly the ones who have been part of maintaining the institution of the church for generations.  This is the only context from which I am qualified to share.

Although Christianity started out as an oppressed faith and group of people, when it became legal, Christians became the colonizers.  That is, people who took over other’s cultures and lands in the name of “saving” them.  The rub, of course, is that most often the people who were being “saved” (read: oppressed, stolen, harmed, hurt) were perfectly happy before we used our faith to “save” them. 
Jesus was from an oppressed minority.  He lived in an occupied land.  Romans were controlling his land – out of town people who told the people there how they should live and what they should be. 
Jesus was a political radical in that world.  When talking to kids, I say things like “Jesus wanted everyone to share and to have enough money and food and clothing and shelter and love to have a good life.  But the Romans, they wanted to be greedy and take all the money for themselves.”  (When there is so much talk about taxes in the New Testament, it is largely money that is sent to Rome or used to pay for the oppressor’s army.) 

Jesus held a protest parade against this oppressive occupation on Palm Sunday.  He rode through the streets while people called him “King.”  He has been preaching, teaching, and healing.  He has been saying that the oppressed could go free, and have a good life without Caesar, and without the worship of Caesar. 

Jesus was tried and convicted of treason.  It was treason to say anything other than that Caesar was God.  Jesus said God was God.  He was guilty of violating the laws of his land, and he died for it. 
God did something amazing with it, though.  God took this death, and created new life.  A promise that death isn’t the end, New Life, Hope, and Resurrection are always the best part of the story – in this life or in the next.   

So, I’m frustrated.  I’m frustrated that my faith that started out as so radically freeing got domesticated.  We created a meek and mild WHITE Jesus who holds lambs and loves kids.  We imagine that we can never be the Romans occupying the land, or the Pharisees performing religion instead of having a relationship with God, ourselves, others, and creation.   

Except we have been.  In Europe and the US, our faith has been used to support slavery, Jim Crow laws, the KKK, and the current enslavement and overincarceration of mostly people of color.  Jesus caused a protest march, do you really think his highest priority was “law and order”?  Jesus was always disrupting the system. 

We colonized this land by taking it over, and often other countries.  Our “missions” involve bullying people into accepting Jesus to get food and clothing.  Our “Crusades” hurt untold numbers of people, families, and Holy sites, and are part of the mess the world is in today. 
​
I’m ready to start being honest about the harm the church has caused over generations.  I’m ready to have a Jesus who disrupts the systems of power that keep some as the haves and some as the have nots.  I’m ready for a Jesus that fully embraces the humanity of all, including calling those with power into being more fully human and to stop oppressing others.  

There are so many things in our history that have been used to oppress, and there are so many things that can liberate. 

We can liberate the story of Jesus to see him as he challenged the Roman and Jewish institutional authorities.

We can liberate the story of Jesus wanting everyone to have enough, and stop hording.

We can liberate the full created humanity of everything God made, including all kinds of people and creation.

We can offer ourselves the forgiveness of God to move forward to action.  A way to let go of the white guilt, white feelings, and shame that often keeps us from seeing the big picture and the harm we are causing.  We can rest in the knowledge that God forgives those who “turn around” (the literal meaning of repentance).  Therefore, we can give up on ever expecting or wishing for forgiveness from the communities we’ve harmed.  That is not their job, it is God’s.  And both those communities and God require that we work to undo some of the harm that we’ve caused, even if it was before our lifetimes.  Jesus wasn’t just about feeling good about ourselves as church going people, Jesus was about the liberation of humanity. 

Can you get on board?  What is the hardest part for you learning to #decolonizeyourspirit? Although being honest is painful, it can also bring liberation, and the promise that after the pain, comes healing.  After staring at death and the tomb, we always have the promise of New Life, and that is the most liberating concept of all. 
 ​

This month, our Safety Pin Box tasks are all about decolonizing. My goal is to put up a blog post each week about the #decolonizeyourspirit task, since that is near and dear to my heart.  Below is my intro, why I love SPB, and how it changes me.  It is incredible.   For other things related, please see #deconolizelutheranism, and for more of my anti-racism journey, please see this article.  

For starters, although people in Safety Pin Box come from all faith traditions, including atheism, is the most church like place I go.  There is no judgement.  We are a group of people working together for justice, and we assume we'll mess it up.  We work through it together, get each other through our guilt and shame about issues around race and our actions, admit when we are wrong, and are accountable to Black women.  Everyone is who willing to learn, to be open, and to be wrong frequently is welcome.  We always end with actions that serve communities of Color.  

Safety Pin Box is a subscription box for white people who want to learn to be good allies in the fight for truly intersectional oppressions.  I can't recommend it enough.  It has changed me to my very soul.  I do it because it makes me a better human being, and a better follower of Jesus.  I now have a much better clue about people's lives that are so different from mine.  I was taught to be blind to these lives growing up.  Both stories of pain the pain that is experienced because of anti-Blackness in the world, as well as all other discriminations, AND the amazing People of Color who are incredible and are changing the world.  I didn't see.  I only saw bad stories of about People of Color on the news, and good stories about white people.  It got to me subconsciously.  I have so much to both unlearn and to learn.  They have a bunch of ways you can join, there's a one time Kid's Box that I love, a one-time Ally Backpack that is a basic intro to racism and organizing, and an E-ally subscription to get started, Pin Pals if you and friend want to do it together, and the Premium and soon to be coming Family boxes.  It is nice because all the money goes to Black Women Being, as those who fight for justice often are not fairly compensated.  Plus, the world owes Black women so much back from the days of slavery, and the current slavery of over incarceration.  They even have a program that small groups can do together.  Click below to learn more about all of it and join today! If you are not ready to join, but you are willing to do something to help those who work for liberation, you can donate to Black Women Being here, or Black women and femmes who need some extra cash right now, often due to racist systems and being activists.  

It is an exciting day!  Today, I found out two articles I've submitted have been published in two different online publications.  I wrote about Race for the Fidelia's Sisters column Just Race, which is a magazine done by the Young Clergy Women's Project.  Since I refuse to financially profit off teaching and writing about racism as a white person (any more than I already do because of the world), the payment I receive from the writing will go directly to black women.  

Now, I am also a contributor on The Mighty!  As I live with EDS3, I've learned a lot over the years about living with chronic pain, illness, and injury.  I decided to stop hiding, being afraid for my career, and to start just being honest.  I can be good at things, and have a hard time with life inside my body.  I want to work for churches and groups that let Pastors be real people.  Sometime soon I'll publish something about how living with EDS3 makes me a better Pastor, and all the gifts to the congregation I bring not in spite of it, but because of it.  I also preached about how Jesus at the communion table has brought healing to my life with chronic illness on my sermon blog.  You can listen here to Broken and Whole, a Maundy Thursday sermon for people in pain. 

Read the published article here on my blog.  
Read the same published article on The Mighty by clicking the button below.  Please also click a heart for me if you read it there.  Thanks!