How Having a Disabled Child Has Made Me Closer to Jesus

If you’ve ever read the Gospels, you will probably agree that Jesus is one confusing dude.

(If you disagree, and think his message is actually quite simple . . . then you and I must not be reading the same book.)

The guy speaks in riddles, answers questions with questions, and tells bizarre parables. At times he seems to contradict himself, the Old Testament, and other authors of the New Testament. You can read the same words twelve times over twelve years and get something different every time. Folks have been debating the meaning of his words for centuries.

But to me, one thing seems clear about Jesus: he really loves losers and is not a fan of winners.

Think about it. Think about the people he chose as disciples, the people he chose to hang out with. Think of the people he healed. And then think about who he criticized.

It is clear to me that Jesus loves outcasts and weirdos, sinners and sick people. His favourite people appear to be the weak, the vulnerable, the poor, and the desperate. He hung out with snot-nosed children and actual prostitutes, and showed compassion to the disabled and the chronically ill.

And he was downright vicious to the wealthy religious elites.

As he famously said, the first shall be last and the last shall be first (Matt 20:16).

He tells his followers that the Kingdom belongs to children, the most vulnerable class of humans (Matt 19:14). He told a rich man to become poor in order to follow him (Matt 19:21). In his most famous sermon, he said: “Blessed are the poor in spirit… Blessed are those who mourn… the meek… those who hunger and thirst for righteousness…  the merciful… the pure in heart… the peacemakers… those who are persecuted because of righteousness.”

Watching and listening to Jesus, I get the sense that the gospel is good news for the marginalized and it is bad news for the rich and powerful.

In Jesus’s crazy, backwards world, the losers are already on top, and the winners have a lot to learn.

And guys, here’s where Jesus gets complicated for me: I have been a winner all my life.

I’ve lived my life covered and surrounded by privilege. I’m white, I’m straight, I’m abled, I’m educated . . . the list goes on. My family is privileged. My friends are all privileged. My church is all privileged.

So it’s no wonder to me now that the gospel has never really clicked in my life. How could I — a member of the privileged class — really understand a gospel that was meant for the desperately poor, oppressed and broken?

It only really started to make sense to me when I gave birth to a medically fragile/disabled child. The experience slowly opened up my eyes and ears to the experiences of the marginalized, and I’m only now feeling like I’m starting to connect with Jesus.

I was given responsibility for a child who was completely vulnerable and dependent on others simply to survive.

This little person who required tubes in his stomach and IV’s in his body to survive? Who would never learn to articulate his needs verbally, or use a bathroom independently, or or even feed himself without help? This was the kind of person I knew Jesus was drawn to. This little boy was counted among the blessed. He was the kind of person Jesus died for, who was already first in line for blessings.

Jesus tells us we ought to become poor, becoming vulnerable like children, if we want to be blessed. And here was a person who already was those things.

And I began to realize that the reason I had never really understood the gospel before was because I’d never really been in a position to receive it. I always already had everything I needed — love, health, security, esteem. Jesus is the King of Losers. He didn’t really have anything to offer someone like me.

But here in my arms was a child who had almost none of the things I was born with.

Jesus came into the world bearing gifts for those who have nothing.  For the rich and powerful, Jesus mostly has severe warnings.

That’s why he famously said that it’s harder for a rope to go through the eye of a needle than for a rich man to enter the Kingdom.*

Caring for my disabled son has forced me to recognize my own privilege, which in turn is forcing me to acknowledge the lack of privilege many others experience. I have had to take some long, painful looks in the mirror, and face the fact that I am among those for whom Jesus mostly had scathing words of condemnation.

By contrast, I have had to come to terms with the belovedness of those whom I’ve ignored, judged, or scorned — people who seemed weak, pathetic, or uninteresting. I realized I was overlooking Jesus’s absolute favourite people. It’s a hard thing to admit.

Again: Jesus. Loves. Losers. So if I want to get to know and understand Jesus, I need to get to know the folks most deemed losers by the powerful.

I have been discovering, over the last four years, that I need to learn from my son and others like him. The people Jesus called “the least of these.” The people we might call “the marginalized.” The poor, the neglected, the devalued and dehumanized. The sick, the dying, the lonely, the outcast.

In our society, this tends to include:

  • sex workers
  • people of colour
  • LGBTQ+ folks
  • disabled folks
  • people with chronic and/or mental illness
  • incarcerated people
  • folks experiencing homelessness
  • folks struggling with addiction
  • single mothers
  • children.

They are already favoured by God. They hold the key to Jesus’ Kingdom.

So for those of us who are privileged? We need to get closer to the marginalized. We need to listen to them and learn from them. We need to elevate and emulate them. I need to sit at the feet of these people and just soak in their wisdom.

I may be a mother to a disabled child, but I’m still totally privileged; so I still don’t think I can really grasp Jesus’ Good News. But I’m starting to look to Jesus’ favourite people to see what I can learn from them.

I would like to invite you to join me.

If you are privileged, you need to listen to marginalized people. If you’re only learning about God from other privileged (*ahem* — white, male, straight, middle-class, abled people), you are not getting at the heart of Jesus.

If that seems like an overwhelmingly huge task to take on, start here: commit to following one or two people who belong to marginalized groups on social media. Someone from the LGBTQ+ community, maybe, or a disabled person. Seek a few out and just start listening to their stories. (They absolutely do not have to be Christian.)

Or if you don’t really do social media, commit to reading at least one book by an author who belongs to a marginalized group. Like an immigrant, perhaps, or a Muslim.

(Of course, befriend these people in real life, too. I’m just wary of making a concerted effort to befriend a marginalized person as you risk tokenizing them. Perhaps start by listening so that you will know how to be a good friend when the opportunity arises.)

I have just begun to do this in the last two years and it has been utterly transformative. I finally feel like I’m starting to see the face of Jesus. (In ways I never did going to white Evangelical church.)

I know I have lots of work to do. The first person I am going to look to is one who is already in my life: my son.

He already belongs to Jesus, wholly and fully. I need to become more like him.

* (Yeah, I know you’ve heard it translated “camel” rather than “rope.” That’s probably wrong.)

playing in pool

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Comments

  1. Thanks for sharing this message today. It shows your willingness to be more like Jesus in your everyday walk with him. It encourages me to be intentional in my interacts with others, knowing that God’s word is true. We are all equally valued in Jesus.

  2. I’m so torn by this blog post, because on the one hand: yes. So true. I’ve been more and more convicted of the same thing lately. But on the other hand, Jesus didn’t come to just reverse the system (was rich=good, poor=bad, now poor=good, rich=bad), but to turn the system inside out completely.

    “[Felix] already belongs to Jesus, wholly and fully.”

    The thing is, Kathleen: so do you.

    Jesus came to save the poor and lowly, but we’re /all/ poor and lowly. The Gospel is good news for the marginalized /and also/ for the privileged. Before God, every one of us is marginalized. We are all broken.

    The problem is that it’s really hard for us privileged people to understand that the Gospel applies to us in the same concrete way someone who is marginalized might be able to understand it. Yes, our privilege is a huge stumbling block. Yes, we should feel convicted when we listen to Jesus. But it’s not that Jesus didn’t come to save the Pharisee just as much as the tax collector. It’s just that the Pharisee didn’t realize he needed saving, whereas the tax collector was daily confronted with his insufficiency–and yeah, we’re definitely the Pharisee in this conversation.

    Jesus tells us to love God and to love our neighbor, yet so much of our religiosity turns us away from God–because, We’re following all the rules! We’re good people! Let us help you save us, Jesus! And then it turns us away from our neighbor–because we try to force them to follow the rules as interpreted by us so that they can make themselves good enough to be worth saving just like us, and if they won’t get with the program they deserve everything that befalls them. When we should be loving them as we are loved, by a God who came to save us even though we were dead.

    So far as the world goes, this blog post is great advice. We need to listen, we need to learn, we need to beware of turning even this listening and learning into being all about us and how awesome we are–turning being a woke white girl into just another achievement on our resume. The tension is real. In our privileged lives in this world, it really does seem like Jesus, as so often presented, has nothing to offer us. If churches only offer the sort of therapeutic self-help you could find in any bookstore, why get up on Sunday morning? To recognize we need a broken and bleeding Savior to wash away our filth, we have to realize we’re shit-stained–but all of our privileges in this world combine to make a pretty strong perfume.

    I guess mostly what I’m trying to say is yes, yes, yes to this post, except: you don’t need to become more like Felix. Maybe Felix can help you to see what you already are: a beloved daughter of God, washed clean in the blood he shed for you.

    • Thanks for your thoughts, Katie. I’ve read them over twice now, and I will have to continue meditating on them. Like I said, Jesus’s message is often confusing, so I’m open to different perspectives and interpretations. I also have to confess that I haven’t engaged with Scripture very much in the last number of years (I blame Evangelical Fatigue) and I probably should return to it, with the new eyes that I’ve gained from recent experiences.

      I know that God loves me and, like, I don’t worry that he’s going to send me to hell or anything. But I can’t help wondering if I need to “become like a child” etc to really, fully experience the Kingdom.

      I appreciate you acknowledging that we’re the Pharisees of today — I feel like a lot of white Christians mistakenly think we’re the persecuted apostles, which skews how we see the world. I can’t help feeling like the White Evangelical Church is perhaps missing the point entirely due to generations of privilege. I hear all of Jesus’ parables and sermons differently now, so most sermons from white/straight/married/abled/middle-class men just seem… OFF to me now. Their ears are so closed to the voices of marginalized people that I fear they’re not hearing Jesus’ actual message. Our rituals feel so bereft of meaning because we’ve forgotten what they would have meant to early Christians.

      I feel like I’m rambling off-topic now… I mostly wanted to say thank you for challenging me; it’s an ongoing journey!

      • Thank you for your graciousness, Kathleen. Later that evening after writing the comment, I suddenly thought, oh no, that was so rude, this isn’t a theology blog why did you argue with her aah! and wished I could delete it. Heh.

        A couple years ago, the pastor at my church was talking about the parable of the prodigal son during Bible study, and he said, “Everyone likes to think of themselves as the prodigal in this story, or even, though only if we’re really lying to ourselves, the forgiving father. But we’re not. We’re the older brother, and we were so furious at the father’s word of grace that we killed him.” (ie, we’re the Pharisees, and we killed Jesus).

        That comment wasn’t exactly the trigger for scrambling the way I think about the Bible, but was maybe the comment that made me realize my thinking had been changing. Ever since then, and in light of the current political and social climate (and I know, all of this is far less personal than it is for you, with Felix), the same ideas you articulated in your post have been circulating in my head, and I’ve been working to figure out more of what I actually believe about this confusing message, as opposed to what I had just sort of uncritically absorbed.

        Anyway, part of that has led to me being pretty sensitive to hearing the word of Law vs the Word of the Gospel–the law always accuses, and the Gospel needs to not just be described but declared to and for you. And I think I kind of went off on a tangent about that, when you were talking about more “experienc[ing] the Kingdom” vs, you know, salvation.

        Though if you don’t mind my asking, what rituals do you now find bereft of meaning? When you say ritual, I tend to think of the Sacraments (Baptism and the Lord’s Supper), and I find those to have more meaning than ever in this context (but I know Mennonites and Lutherans are prrreeeetty far apart on those, and you may mean something else entirely anyway). (Which, side note again, a podcast I listen to regularly recently did an episode on Simon Menno which was interesting, not least because I didn’t actually realize Mennonites were named for someone, which maybe circles back to the whole topic of having a very narrow perspective in and on church, ha.)

        • I just realized I never responded to this — sorry! I always appreciate your comments, and they’re always thoughtful and kind, so you don’t have to apologize! I agree that our experiences of church are probably more different than we realize, and that is sometimes causing us to misunderstand each other. My current church (that I never attend, heh) is made up of former Mennonites who want to be nondenominational Evangelicals, so it is organized and feels like an Evangelical megachurch; so that’s where I’m coming from. So I’m MOSTLY commenting on Evangelical culture, with only a vague familiarity with Mainline Protestantism and Catholicism. Everyone is white and middle-class, mostly blue-collar. It’s all contemporary worship songs, off-the-cuff prayers, etc. No liturgy, no traditions, no rituals; services are just corporate singing + sermon, with a short, spontaneous, pastor-led prayer. (Communion happens maybe twice a year; baptism once). Sooooooo… I dunno, it just feels really empty to me. The goal is to get more people “saved” and sitting in pews on Sunday mornings, with a lil bit of charity work/donations. I can’t help feeling like we’re largely missing the point.

          This is a little off-topic, but I actually yearn for my true Mennonite roots, but in our community (made up largely of former Old-Colony Mennonites, who historically reject education and wealth), being Mennonite is considered uncool and kind of embarrassing, so everyone is clambering to become contemporary and “relevant.” I would love to go “backwards,” but haven’t found anyone who wants to go there with me.

          • That is indeed very different. These conversations are always confusing for me, because I’m a kind of Lutheran categorized by Pew Research as “Lutheran in the evangelical tradition” as opposed to Mainline Protestant Lutheran. Basically, we’re too liturgical for all the groups you normally think about when you say Evangelical, but too conservative for the Mainline peeps. Which makes church conversations of all stripes a little confusing, but is pretty much the way Lutheranism has been since the sixteenth century–not quite one thing or the other. And when you talk about being Mennonite, insofar as I have any idea what Mennonites are like, I definitely was not thinking modern nondenom.

            Anyway, to the point then: yes, a bunch of people just trying to get more people in for weekly concerts and lectures doesn’t really seem like the point of Christianity at all, and if that’s the ritual you’re talking about, I completely agree that it’s meaningless. It’s missing the point both of what God did for you and what you’re supposed to be doing for your neighbor. Certainly I think liturgical traditions can end up in the same meaningless space, where it’s all done by rote in homage to tradition and the meaning and what’s actually happening is lost. But at least with a liturgy you know there was meaning there to begin with, even if the congregation has forgotten what that was, whereas the nondenom style…well. Soapbox, ha.

            I wish there was a little old-school Mennonite church for you in your area, because I can hear how strongly you identify with your Mennonite roots, and yet how completely the current, local version of Mennonite-ness is failing you. But maybe sorting out how your thoughts about the Gospel and Jesus are changing should involve visiting some different churches and seeing how they live it out–how the Gospel informs both their worship and their service to others or political worldview, etc.

            I think sometimes people like us, who do a lot of living in our heads and THINKING about EVERYTHING, /need/ to get out and see some of these ideas in action in the world. Which can be super hard with small children, especially ones who have specific, specialized needs. But Jesus isn’t just a spiritual thing to think about that will get your soul into the good place someday. He’s real and physical and present in the world today, and the main place he’s promised to meet us is at church, in the Word and Sacraments. And his meeting us there should change how we act here and now–not because it adds a new list of laws for our Pharisaical natures to follow, but in all the ways you were talking about in your original post and more. And maybe the next step after your reading and thinking and writing about all this, is to try and see how others live it out in the world. If you can’t find someone who wants to go “backwards” with you, maybe you can find some who are going “forward” the same way you are.

      • If your interested in the ritual and tradition of the early Church you should look into Orthodoxy. This book is greathttps://www.amazon.com/Life-World-Sacraments-Orthodoxy/dp/0913836087/ref=nodl_ but also you should check out an Orthodox Church for a taste of what it looks like today. It’s very interesting. I love that you leave church with all your senses filled and renewed. Heaven on Earth. Holy. I appreciate coffee hour after every service (a time to eat and talk together after service. Many break their fast together at that time.) Check this link out for an interesting map of church history http://www.srocps.org/site/articles/timeline_of_church_history

  3. Brittany cook says:

    THIS! Is so beautiful!! Thank you for sharing what your pilgrimage toward Jesus is looking like through so much change in your life. This is an incredible perspective.

  4. Thank you for sharing this. I have been looking forward to your thoughts on this topic. Love really is the most important factor in all of this, and Jesus’ love is real, and for all. Obviously the journey to find God’s love for us, and being filled with the love he feels for all, will vary for each individual. So thank you for sharing your journey.
    My dad used to say that the biggest trials in life were to be too rich and too good looking, then he would joke, “and unfortunately for me, I’m both”, which always got us laughing. But, as you describe, if we are so fortunate, or “winners”, it can be immensely hard for us to realize that we need the Savior to save us every bit as much as the marginalized. So, no wonder he needs to warn the prideful so directly to heed his words, learn to love others, or experience the long-range consequences.
    I can agree that many “winners” seem to profess a teaching that is shallow and unsatisfactory, especially when life gets really tough(and I have experienced it as well). I have also learned (and am still learning) to be hesitant in cutting out a group of potential “teachers” just because I can’t immediately see what their trial is. They seem to have it all, so how can they truly “get it”? My church has a hymn with one line that stays in my mind. It says, “In the quiet heart is hidden Sorrow that the eye can’t see.” (Lord, I Would Follow Thee) Some people’s trials are obvious to see, but so many are not visible to others. I have judged many unfairly as unworthy teachers of God’s love because their life seemed too blessed. I have learned a lot from those with visible trials (specifically a freshman year roommate with EB), and as you suggest, could make a concentrated effort to learn more. I’m sure it would bless my life,and my capacity to love would expand as you are experiencing. But, I guess I am trying to say I also want to keep my heart and mind open to learning from my fellow “winner” sinners. It seems it is more a matter of the state of their heart. Have they, or are they sincerely trying, to become “like a little child”, or “meek and lowly in heart”? Have they learned important pieces to help tutor me on this path as well? I find them on the internet, around my community, and in church too, seeking for direction, peace and solace.
    May God bless you, your sweet family, and all of us, with his love.

    • Thank you for adding your perspective, Laurie. I think you make a really important point — we don’t always know the ways other “winners” are suffering or struggling, and we shouldn’t be so quick to assume they don’t have valid contributions. Thank you for challenging me to still listen to those who seem to be “on top,” and keeping my heart and eyes open to their suffering as well.

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