My wheelchair confines me — but it also liberates me

Jan 05, 2024

By Wayne Barr
Like Moses’ staff, my wheelchair can part a sea of people. Yet my wheelchair is the ‘elephant’ in the room that everyone sees but nobody talks about. It frightens many and awakens presumptions. As a paralytic from the waist down, I need the wheelchair. Seen as a sign of weakness or disgrace or as an evoker of pity, the wheelchair has been judged unfairly.

Despite its utility for those with mobility loss, and the life lessons its occupant learns from having to use it, the wheelchair continues to be a symbol of dashed hopes and dreams.

My wheelchair allows me to join in the celebration of the Eucharist and chant the Liturgical Hours with my Benedictine neighbours. I can host guests at a community pantry/kitchen in town and wander down a country lane delighting in God’s creation. I can enjoy a ball game and beer with my buddies.

Wheeling around also reminds me of the physical autonomy I once enjoyed and took for granted. I miss feeling the sand between my toes, playing tag with kids, tossing a football or fielding a fly ball. I miss huffing and puffing up a hill or just pacing back and forth. No longer can I sneak into a restaurant without much ado, nor can I navigate potholes and sidewalk cracks without knowing ahead of time the turf I traverse. Is the dare of facing traffic worth the risk?

Dents in drywall where I have passed by are common. Running over a cat’s tail or a friend’s toe happens more often than I like. Tipping over a display stand at Walmart or becoming stuck or even stranded for minutes or hours is not unusual. I cannot mount a sidewalk unless there is a cut in the curb for my wheels. My ability to wheel distances is limited to a battery’s capacity. Pressure sores from being bound to the chair occur often and, in their wake, require surgery.

I acquired my physical disability at age 22. An errant gene in my DNA triggered an inflammatory attack on my spine and hips. Before my journey as a differently-abled person, I treasured my youth and athleticism, my ego and my pride. The gradual loss of mobility and becoming hunched over led me to withdraw from myself and the public. I was filled with grief, anger and frustration. Feelings of guilt or the need to apologise kept me brooding.

At first, I was dependent on assistive devices to propel my feet forward, but my condition deteriorated. I went from hanging on someone’s forearm to using crutches, then to relying on a walker. The disease finally compromised my spinal cord and I went to using a wheelchair full time. Even reconstructive surgeries, spinal rods and artificial hips could not stay or deflect the disease’s progression into paralysis.

But the gradual loss of sensation in my legs awakened my awareness of God’s compassion reaching out to me through others, nature and the contemplative life. I now see my wheelchair as a grace.

Relying on a wheelchair makes my life open; I am exposed in all my humanity. This includes my physical deformity, pain and paralysis; my dependencies and rejections; my humility and frustrations.

I have no prop to hide behind or pose I can adopt to pretend. Kindness attends the majority of my public interactions; the readiness of another to reach for the item atop the third shelf or smilingly hold a door.

Despite undergraduate and graduate degrees and certifications, work was scarce and chances of job advancement were denied due to a disease that bowed my back and stiffened my steps. My dean at SUNY Empire State College, where I worked a half-time position as an adjunct, even wondered why I would want to work full-time as a professor. “You receive SSI disability, don’t you?” he said. “So, why pursue a full-time position?”

For years I have been stared at, treated like a child, whispered about, pitied and assumed to be lacking in discernment and intellect. In a country and community that value their independence and celebrate the rugged individualist (while seeking social conformity from those very same individualists), I cannot compete. I rely on others to help me dress, bathe, tend to my wounds, change catheters, eat and perform basic bodily functions.

Before I became known as the “wheelchair guy,” I was the “bent-over guy” because of my spinal deformity. Many of my friends drifted away as I isolated myself. I relished the past and was forlorn over “what might have been.” Fear of the future also preoccupied me.

For me, structural barriers were less intimidating than someone else’s attitude. Many able-bodied people cannot see past the wheelchair, nor its occupant, without imagining a life of despair, unaware of its beauty and value. My time is seen as expendable, whether in the waiting room or with the individual who needs to be listened to and narrates to me his/her life story.

Then God’s grace led me to a Benedictine monastery. The prior welcomed me to live and participate, as a layperson, in the cloister and choir. I experienced the Rule. I enjoyed both communal and private prayer in silence and peace. I read Scripture. I felt the monks’ compassion. All of these things lessened my fears and frets. Through introspection and grace, I came to realise that “differently abled” is a gift. I was becoming the individual that God intended me to be. No longer obsessing over the past and what might have been, nor fretting over a fragile ego that worried about what another thought, I was free to forgive and tolerate.

No longer do I have to contend with the hassles of “hurrying,” either physically or emotionally. I do not have to participate in our socioeconomic need for efficiency, speed, time and profit. I now have much more peace, appreciation and attentiveness to the here and now.

My prayer has gone from seeking a cure for my ailments to realising a true healing: self-acceptance. I accept myself, in all my imperfections and frustration, my pain and paralysis. I recognise Christ in the other. Though my wheelchair confines me, it liberates me. It is no longer restrictive but redemptive. My wheelchair not only separates me from the “herd,” but it also, paradoxically, brings me closer to it. Experiencing God’s love, I can interact with the public without feeling shame, guilt or embarrassment. I have only a longing to serve.

A sibling recently told me that if he ever found himself in my position, paralytic and in a wheelchair, he would end his life by going off into the woods, never to be seen again. Despite his cold and distancing comment, as I sat in my wheelchair, I could not help but look at him and sadly think, “There, but for the grace of God, go I.” --America