March 22, 2011
Updated February 26, 2020
3 comments 176 views Posted by Mark Stephenson
I had an odd thought today. At least, it seems like an odd thought for a guy who views life from a wheelchair.
Is it possible that I’m too dismissive about the issue of following Jesus as a person with a disability?
I connect with a lot of people online, mostly on my Bouncing Back blog but also via Facebook and other social networks. Many of these folks deal with disability. They face pain, accessibility issues, financial difficulties, relational challenges, and an entire array of emotional and psychological side effects.
My message centers on hope, encouragement, possibility, and new beginnings. I want everyone, disabled or not, to see and experience the joy of following Jesus and serving others.
I work hard at making life as positive and productive as possible. I try not to sit around feeling sorry for myself, and I don’t want others to feel sorry for me. Pity, self- or otherwise, simply doesn’t help.
But I wonder if it’s possible to take that approach too far? Do I convey the attitude that living with a disability is really no big deal? Or, worse, do I give the impression that it’s some sort of heroic existence deserving special admiration?
Life’s not always fair or easy or comfortable. As someone once said, Jesus promised His followers a banquet, not a picnic.
Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own. (Matthew 6:34)
Each day has enough trouble of its own—even in the best of circumstances. As Christians we know we’re all “disabled” in the sense that we don’t live as God intended.
But let’s be careful not to use that sort of language to dismiss or romanticize the difficulties faced by those with additional impairments. There’s nothing gallant about everyday life with a significant disability.
In A Million Miles In A Thousand Years, Don Miller talks about writing our lives as compelling stories. He correctly observes that great stories involve a central character who overcomes obstacles to reach an important objective.
Great stories need conflict and struggle. Imaginary conflict is romantic and heroic. Fictional pain and terror are exciting and glamorous. Make-believe tragedy rivets our attention. Conflict-free stories are boring and lifeless.
It’s a great metaphor, but we must remember that it’s a metaphor.
Life isn’t a movie or a suspense novel. Real-life pain hurts and there’s nothing heroic about day-to-day life with disability. Real tragedy isn’t magically or quickly resolved; sometimes it’s not resolved at all, at least on this side of eternity.
When I wrote Relentless Grace I resolved to be as transparent as possible about the obstacles and failures I encountered in adjusting to permanent paralysis. I didn’t want to write the made-for-TV movie in which the scene of a tragic accident dissolves directly into victory and triumph. That’s not how it works.
I’m not advocating that we ought to dwell on misfortune—ours or others’. That’s not the life to which God calls us.
I’m simply reminding myself—and maybe you—to acknowledge the reality of the struggle. Let’s seek God’s guidance in finding the delicate balance between demeaning pity and the temptation to glamorize what’s often a gritty, daily grind.
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Your post brings up a very important aspect of living with a disability! It is a great reminder to those of living with a disability, as well as to those of us who share their lives with a person living with disability/chronic illness. While you want to encourage everyone to find things we can appreciate in daily life, sometimes a person needs to vent and get the 'uglies' out-and feel that the people they talk with understand the hard stuff, and they need to feel that it's OK to get frustrated at times...we all need validation; and if something truly sucks for you, sharing those thoughts and feelings with someone you trust can turn into a nightmare very quickly if the person listening tries to 'soothe' you with sunshine and lolly-pops :) Even worse (in my experience) is the feeling of not being taken seriously; as if you are complaining and creating drama-and wasting the time of the person listening to you.
It is a difficult balance to keep, and there will always be misunderstandings along the way, but as long as we remember that honest communication and respect is the key to building and growing relationships, we will do just fine in the end. Your words of inspiration are a precious gift to many people on the days they feel hopeless, and your transparency with Relentless Grace keeps it real.
Keeping dialogue open and honest with Jesus is a good thing to remember as well. He knows our situation, and will be walking right beside us every step of the way-even on those days we feel so darn alone in our journey. He sends compassion through the people He puts in our path, and gives us that very same gift to pass on to others when we feel stronger.
Ken and Spitfire,
Yes, I really appreciated Rich's post for the reasons you give. I hope you take time to read his book Relentless Grace; it's honest without being self-pitying, including the parts in which he confesses his self-pity.
In our experience as parents of a child with severe disabilities, we had to be very careful to whom we spoke and what we said for fear that it might seem like we were complaining. The last thing we wanted was to have it seem that we were complaining about our daughter. But honest sharing about a typical day could sound like that. So of couse, when people asked us how we were doing, we would say, "Fine," and leave it at that.
When I instruct seminary students about pastoral care with people with long-term needs, I encourage them to take the posture of a student and the person with a disability and/or family members are the teachers. I tell them that one of the most loving things they can do is ask, "Tell me what a typical day is like," then just listen and let the other know that they are heard. For Bev and me, it was a rare and wonderful love when someone truly wanted to get educated on what a day was like in the life of our family!
"But I wonder if it’s possible to take that approach too far? Do I convey the attitude that living with a disability is really no big deal? Or, worse, do I give the impression that it’s some sort of heroic existence deserving special admiration?"
"But let’s be careful not to use that sort of language to dismiss or romanticize the difficulties faced by those with additional impairments. There’s nothing gallant about everyday life with a significant disability."
At first, when I read that I wondered if the author was into ableism or if my blog about the Chronically Normal was the appropriate response. M disability doesn't make me use a wheelchair to get around or crutches. In fact, most people who look at me briefly would probably not know I have a disability since it is invisible to the naked eye--unless they see me talking to someone they can't see. Of course, nowadays with cell phones the fact that someone is talking to someone you can't see doesn't automatically lead people to conclude you're odd, since they would not necessarily see the phone, or that thing that some people have in their ear. from where they sit on the bus.
But as I got off a bus once in a while I've had people look at me as though I were from Mars or something.
These days I have bigger problems with side effects from medications than the symptoms of the illness itself. If I don't get to sleep at a certain time the sedative carries over into the next day. If I have to get up early for some reason I don't get enough sleep and become testy and impatient. I also feel I tend to pass gas a lot more lately.
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