Disabled and Whole

October has been stunning. The other day, I posted some pictures of our family at a pumpkin patch. Classic Fall family fun. We love the pumpkin patch. The leaves have been showing off in Wisconsin and we bought pumpkins wayyy too big for our little apartment. Roman picked them with such fervor! Between the tractor that Roman got to ride with his friend and the baby cow, we were in the Fall spirit. As we made our way around the pumpkin patch, I freely used my new mobility aide, a walking stick that I have been using for about a month. The addition of “Gandalf the Gray”, a trekking pole that gives me an extra balancing point, has been a really positive and affirming decision that I made confidently between me, Jesus, my husband, and my healthcare team. Little did I know the social implications of such a decision on me personally and our family. It’s been shocking and hard to swallow. All of a sudden, an invisible disability becomes visible to the outside world. I often pray, “Lord, please keep my heart open and not closed off in all of this. It’s so easy to shut down and become cynical in the midst of so much lack of education and understanding.” It has driven me to stand in my identity in Christ and lean into what being covered by His blood means. He’s helping me to tune out the lies and assumptions being tossed at me, like grenades disguised as “cures”, by fellow believers and the world, but the onslaught seems relentless. For a few years now, it’s clear that the outside world has seen my body as prime real estate for any questions, comment or unsolicited recommendations, in the absence of safe, personal relationships. I want to emphasize that: in the absence of safe, personal relationships. I’ve never experienced this onslaught quite to the caliber of when I picked up a mobility aide at age 29. Do these strangers lean to each other and say, “Run and grab your commentary mics”? It sure seems that way. I wish my physical therapist had told me to get ready for the proverbial “treadmill” of society’s internalized ableism to go from already too fast to faster. 

For the record, NO ONE who chooses to use a mobility aide owes anyone any kind of explanation, and yet the overwhelming amount of people lately who’ve shown a lack of understanding surrounding mobility aides, disability, (or just basic human decency) leads me to want to explain, mostly for the sake of others like me. 

Mobility aides are “energy-saving” tools that can be picked up and put down with discretion whenever a person needs them. Just like a pair of glasses, you can put down your mobility aide whenever you choose and you wouldn’t think that someone who took off a pair of glasses is just automatically able to see again. Some days, people swap their mobility aide out and opt for a more discrete one that fits under their clothing. You wouldn’t see it but it’s there. You don’t see them using a walking stick that day, but they are still wearing support. Or perhaps that day, they are less fatigued and put the mobility aide down, which is completely within the realm of possibility. Yet assumptions often fly because they’ve “put the stick down”. Reserving your own personal assumptions surrounding someone else’s mobility aide is important. 

An extra balancing point has been greatly helpful to me. I can walk just fine on my own and I lightly exercise. This doesn’t mean someone with a disability cannot use a mobility aide when they need it. It doesn’t mean that when they do use a mobility aide, that they are doing poorly in their health or “are going downhill” by any means. Many have assumed that I am doing worse or poorly since picking up my stick. I am not doing worse because I chose to have a mobility aide. Actually I am quite proud that I equipped myself with the tools to have a better quality of life. It’s been freeing. Not doing worse, thank you.

Mobility aides can allow people, like me, to bank energy (like energy-saving mode on an iPhone battery) so that there is a bit of a reserve to enjoy quality time with family, do an extra fun activity, or put down the mobility aide later on. If you see me or someone else without their walking stick, it doesn’t mean they are cured or faking their disability. To a disabled person, these assumptions are deeply hurtful, and are examples of internalized ableism. It is key to be aware of this if you seek to know, love and embrace other humans fully as Jesus did, especially those within the disabled community. 

Here’s a typical Sunday afternoon. I’m walking next door to the coffee shop. I go to get a cup of coffee for me and a friend. A complete stranger accosts me outside the shop. In a less-than-desirable tone, he says, “Hey what’s wrong with you? You don’t look disabled. Do you really need that cane? Do you exercise? Exercise is supposed to help with both MS and Parkinson’s if you didn’t know that. Have you tried taking x,y,z? I saw it on a talk show once. What do you do for exercise?……questions and comments fly out of his mouth like bullets. 

…..”Um, sir….This is none of your business….Have a nice day. I walk away. 

“Thank you for eyeing me up and down over my PSL and judging if I’m disabled enough by your standards. I can’t quite hold the tears back on the way home. My skin gets a little thicker. “Oh Lord, keep my heart soft in a world that is so hostile towards people like me. I don’t want to harden over, even though it is so tempting”  

Play that on repeat. Day in, day out, wherever you go in public. There’s typically someone. And sometimes is not in public, but within the church walls. A typical day in the life. Jesus is teaching me a lot of grace lately. It’s hard to feel safe to move towards other humans these days. Especially when so many interactions with new people look like this… 

“Well, surely you cannot have more kids?” (Very untrue of people with MS). 

Do you have pain? It’s All DAY? You are sure about that? What do you take for pain? What does that do to you?” (Yes, I am sure about that. How could I not be sure?….And no, my personal medical info is not for display.)

“At least you don’t have to walk too far to the physical therapy room. It’s right there. That’s nice for you.” (Assuming how far I can walk. I actually love nature walks with my family.) 

The best is being sized up at the DMV when you are young and apply for an accessible parking pass. Oh and you must keep the application signed by your doctor on you at all times so that if you are pulled over, an officer can potentially judge your disability and ask for “proof”. Yup. Someone can judge you if you’re “disabled enough” for an accessible parking pass and ask for proof. Wow. 

There’s too much to continue on. Jesus, have mercy. Many people with MS report struggling with depression, and no wonder. There’s such a lack of safe spaces to simply exist and be human with a disability, accepted without being “something to fix or pity”. It can make forming new friendships extremely difficult and overwhelming. And there’s a long transition period that happens in old friendships as each is so unique in its own way. I can relate to this firsthand. And yet, so often people like me are called “brave” or “warriors”. I had no idea I would inherit these titles simply for breathing or existing in this world in a state I never asked for. You call me brave. I call me alive and present. 

I titled this post intentionally. So often we miss out on the actual living, breathing person right in front of us because we are curious in a self-serving way. Curiosity that serves your own means is the kind that leaves no deeper relationship. That person leaves with some information. The other person leaves feeling violated. 

My friends, THERE IS A BEATING HEART AND A PERSON BEHIND THE CHRONIC ILLNESS/DISABILITY/MOBILITY AIDE. 

A human being worthy of being known. Thankfully, Jesus is a beautifully curious man. He holds a “posture of curiosity”, not for his own means, but for the means of pursuing His Beloved. Curiosity might be one of His most glorious qualities. He is a God of pursuit. Curious to know us forever. Epic tales throughout time pail in comparison to the God of the Universe in His pursuit of us. I wonder how deep His curiosity goes when He looks at each of us and, in His Omniscience, takes the time to know us deeper than depth itself. May we experience the same as we gaze upon Him in return. 

Lately, I have been curious as to how we humans have this amazing opportunity to take a posture of curiosity towards one another’s true selves. Are we curious for the sake of our own means?  Are we just apathetic? Or do we take on a posture of curiosity that looks and smells and sounds like Jesus? A curiosity that SEES and seeks to know the heart of a human before anything else. 

In her book, “My Body Is Not A Prayer Request”, Dr Amy Kenny writes of many experiences where she is accosted by people in church, at coffeeshops, grocery stores, on vacation and more, an experience I relate to heavily. Reading the book gives the title deep meaning and understanding. I highly recommend it! 

“Sleep with soap,” they suggest. “Bathe with Epsom salts, she recommends. “Have you tried rubbing herbs on your feet? It helped my cousin. they trail off. People accost me at the grocery store, in Target parking lots, and even in the middle of church, as if everyone has a right to know the intimate details of my medical history whenever they choose. As if my body is a topic of discussion for everyone to share an opinion about. As if I am a problem to be fixed. This is what it is like to be disabled in an ableist world. We are erased from a society that never wanted us around and continues to use extreme measures to cure us instead of accepting us as we are. I have come to expect this from the medical-industrial complex, because the people caught up in it only know me as medical case file #162742 and not as a human being. But I refuse to accept this from the body of Christ, whose members are invited to value the diversity of God’s creation instead of erasing it. They push cures down my throat without wondering how God is at work through my disability. These moments are always bewildering because they center the experience of the non-disabled person, pitying my disability without knowing anything else about me. I am not waiting for a cure to live an abundant life, and if folks would take the time to get to know me as more than a diagnosis, they would know that.

“They think they are being faithful; that much I want to believe. But some days it is hard to convince myself of their pure intentions because I am the only one who emerges singed by these encounters. This woman uses the prayer card to justify imposing her prejudice on a stranger she assumes despises being disabled. I am not confined to my wheelchair. I have not lost a battle to a disease. I am many things, but a tragic defeat is not one of them. Afterward I replay the encounter in my mind, wondering what I should have said differently, knowing there will be a next time. I wish I was whole in their minds–enough to exist without needing a prayerful remedy to cast out my “demons”, full human who has something to offer other than a miraculous narrative. I wish I could be more than my diagnosis, more than a problem in need of fixing, as if my disability is only valuable if converted into a cure. I wish prayerful perpetrators were free from the lie that I am worth less simply because my body works differently. In each of these encounters, I come away feeling like my stomach has just dropped out on a roller coaster. I am confused by the way people interpret my disability as in need of “fixing” without knowing anything else about me. I am troubled. that my body becomes public property they feel they have the right to control. I am indignant that this takes place under the veil of Jesus-following, as though they are the bouncers to God’s table. I am hurt that I must justify my own existence at church. Belonging shouldn’t have the admission price of assimilation. My story is not unique. Most of my disabled friends have their own stories of strangers approaching them to pray away their disabilities, sometimes at church, other times on public transport or at the grocery store. No place is safe from prayerful perpetrators. It’s draining to endure, especially because the people who do this don’t intend to cause us harm. They just haven’t considered how the assumption that disability needs “fixing” is dehumanizing. Some of the irony is that my life isn’t disastrous or deficient at all. Most days, my disability isn’t the worst part of my day, or even what I need prayer for. To assume that my disability needs to be erased in order for me to live an abundant life is disturbing not only because of what it says about me but also because of what it reveals about people’s notions of God. I bear the image of the Alpha and the Omega. My disabled body is a temple for the Holy Spirit. I have the mind of Christ. There’s no caveat to those promises. I don’t have a junior holy spirit because I am disabled. To suggest that I am anything less than sanctified and redeemed is to suppress the image of God in my disabled body and to limit how God is already at work through my life. Maybe we need to be freed not from disability but from the notion that it limits my ability to showcase God’s radiance to the church. What we need to be freed from is ableism.”

 We, the Church, go around talking about “being like Him” and “being formed into His image”, and yet, so often, we are so uncurious, uninterested, apathetic towards the human beings around us. Or curious in a self-seeking way, not seeing the beating heart of the image bearer in front of us. And what their stories actually entail. The highs the lows. The dragons, the castles, the motes, the drawbridges, the battles.

We are quick to pry about the things that are “interesting” or “out of the norm”, like a younger woman with a walking stick. We miss out on the woman behind the stick completely. Or the man with the walker. Or the Image Bearer right in front of us, whoever that may be at any given moment. 

Thank you, Jesus, that you don’t focus on just what’s “interesting” in the moment, but rather You are curious about our true selves. Thank you for knowing US. It’s the greatest joy to be in a MUTUAL relationship with you, knowing You and being known by You. You don’t stop at “the stick” or “MS” or “disability”. You know each person’s name and you knew it before the beginning of time. Thank you for upending the entire paradigm of wholeness and living in abundant life so that it has nothing to do with the physicality or ability of our bodies, but rather your Holy Spirit’s residence in them. Lord, I wish that so many could see past simply “praying away” the disabilities of others and instead seeing the Holy Spirit that lives within the disabled community. There is certainly a time and place to pray for physical health, but this perception that disability is the “less desirable state” to be human next to fully-able needs to end!! So many in the disabled community are opposed to Jesus and church because they feel rejected in their current state of being. Jesus, your Kingdom says we are accepted because of YOU alone. May we stop pushing away others with our “good intentions” and cross-stitched verses. Disabled people are human beings, not looking to be bombarded with Scripture or unsolicited advice. In the context of a trusting and safe friendship, part of knowing one another is sharing life’s experiences. We know that many will tell all about their lives, including their disability, if you acknowledge they are a human being first and seek to know them as such. Jesus, renovate our hearts and change our vision. 

People with disabilities are not looking for your pity. We are looking for safe and authentic relationships just like anyone else! Honestly, I grieve over how much the church’s eyes are stuck in that “pitying” position. It doesn’t look like the Jesus I’ve come to know through all of this. People with disabilities are not pitiable. Whether you are disabled or non-disabled, I want you to know that you are loved, cherished, seen, and worthy because of Jesus! He looks on you, not with pity, but with love and longing. He saw you, in whatever state you are in this very moment in time, and went all the way to the cross and beyond for you because he wants forever with you that much! You are priceless!! 

So, I am curious about something. Did curiosity kill the cat? Only the self-serving kind. But I promise, it won’t kill the church if Jesus’ type of curiosity and pursuit is our goal. It might be the church’s blind spot and worst fear. But it could also be the church’s revival. Jesus, help us lean in. Let’s get curious in the Jesus way. Together.