That all changes when the exit doors open wide, stage left, and a daisy chain of four wheelchairs files in, the first one occupied by my little brother Ben. He is trailed by fellow residents from his direct-care center. I recognize the three caregivers, women who have nurtured and doted on Ben for years. They position the wheelchairs on the tiny dance floor between the stage and the café tables, facing the bandstand. Somehow the women have found out about my steady gig, and made it an excuse for a group outing. But I had no warning and forget how to play the guitar for long moments. One of the caregivers waves at me; I pretend not to notice.
It had been a chilled scene before, heads bobbing over candlelit tabletops. But now, the audience is an attentive multi-eyed monster boring its gaze frontward. Our playing becomes self-conscious, or maybe it’s only mine. I’m parked on a stool, stage right, my amp elevated on a milk crate between me and the wall. I try to lose myself in the hard bop groove, chording syncopated rhythms over which our alto saxist can shred. My eyes stay locked on my fret hand, denying Ben’s presence like I have for so long. It has always been easier that way.
Sixth grade. I was on the mound in a Little League game at Friendship Park. It was my first start, and I was vexing batters with a wicked forkball that Dad had shown me during one of our catch sessions. Strikeouts were accumulating nicely. I was in mid windup when I heard my brother’s lyrical yelp from the sidelines. Mom had materialized with Ben, who was buckled in a stroller, sitting in the grass off third baseline with other lawn-chaired spectators. It was a chilling surprise.
I had told her to never bring Ben to any of my games because I didn’t want people to associate me with him. But Mom insisted on witnessing my big day, and bringing Ben was the only way she could attend. My brother’s condition was something vulnerable and private for me, something to remain hidden behind the mustard-colored aluminum siding of our house.
In no time, Ben’s hiccupped joy yips interrupted the game’s flow with a heckler’s persistence, making me walk batters until I got pulled and sent out to center field.
Two kids sat behind Ben, snickering and mimicking the way he purred nonsensical words. His ticks, screeches and effusive laughter were a clown act for them. I was at bat when I heard Mom’s raised voice. “Do you think cerebral palsy is funny?!” The game went into suspension. I saw her standing over the two kids who shrank from her Hispanic ire, reduced to sedate mutes. My brother’s blipped expulsions finally pierced the silence. The game forged on. I never acknowledged Mom and Ben that day, staying close to my team. Mom hung back, allowing me to be a Judas harboring inconsolable embarrassment. By the time the game was over she and Ben were gone.
My brother came along three years after me. Upon his arrival, the doctor told Mom that it might be better to institutionalize him, and that kids like Ben usually didn’t live long. But giving a son away wasn’t a thought for Mom and Dad: cerebral palsy, a missing left eye, and profound mental retardation mattered not.
Ben has almost no use of the right side of his body, where his leg and arm stay bent and closed for business; they are atrophied and stiff compared to his virile left limbs, which are super strong from being taxed with double duty. He can’t walk, yet has no trouble scooting on his butt, pulling himself forward, using his good leg.
My brother easily wins out as the more ornery sibling. Growing up in our two-story home, he liked to storm the kitchen, where he could scoot more easily in his rubber pants over the vinyl floor. Opening the lower cupboards, he’d yank out all the pots and pans and sling them helter-skelter over his shoulder. Tupperware and tin flew about as if by poltergeist infestation; banging cookware in a frenzied tantrum was his idea of fun.
Early on we played like ordinary brothers—in our own way. I’d unfurl my sleeping bag at the top of the second-story stairs, sit on it with Ben in my lap, curl the end of the bag over us, and toboggan down at dangerous speeds. Or I’d turn the piano bench upside down, put Ben inside and whisk him around on the carpet in a makeshift go cart. Sometimes I’d pretend to be in agony, making loud moans, at which he’d shriek with laughter—he loved it if he thought I was in pain. Often, when I did something he didn’t like, he would scratch me with the talon-sharp fingernails of his left hand, or he’d bite into my arm like it was a BBQ rib. He did it with such explosive speed that I never saw it coming.
Ben initially had some vision in his only eye, but later it developed a cataract, and so my parents arranged for an operation. He was up in the operating room when the doctor came down and told them he wouldn’t be able to proceed; Ben’s eye was too “mushy” to withstand surgery.
As the cataract stole his sight, my brother’s eye started to rove, in constant motion like one of those swiveling spotlights atop a Vegas casino. In blindness, he gained extreme auditory sensitivity, spending much of his downstairs time on the floor in the dining room, absorbing Top 40 songs played on the radio through our stereo system.
With the left side of his face pressed into the spongy cover of the tall stereo speaker, Ben’s body took on a hunched posture, his spine curved by double scoliosis, head balanced over crossed legs. This is how he sat for hours, rapt, mainlining harmonic vibrations, sometimes breaking pose to rock his upper body in time.
I’d step in and deejay when the mood struck, spinning vinyl on the turntable for him. If he didn’t like a song he’d tilt his head up and caterwaul, and I’d move the stylus over until he started giggling and cooing with approval. Over the years he was at home I exposed him
to The Beatles, Boston, Queen, Led Zeppelin, The Jackson 5, Bread, Eric Clapton, Elton John, The Commodores, and some of Dad’s jazz albums, including Dave Brubeck’s Take Five, and Ramsey Lewis’ The In Crowd.
My parent’s never asked me to take care of Ben. Even when I was old enough to babysit, they didn’t shoulder me with the responsibility, instead hiring a trusted high school girl from the neighborhood. I never fed my brother, nor bathed him. I never helped him in or out of his clothes, changed his diapers or gave him his meds. I never even gave him anything for Christmas or his birthday.
There was one thing I did for him, though. I always made an effort to pick up his spoon. His spoon was his musical instrument, his artistic outlet. He would sit in his adult-sized hospital crib that, which stood high off the floor like a chromed elephant skeleton, drawing metallic rhythms from a teaspoon from the kitchen drawer. Knees akimbo, left shoulder leaning into the elephant’s ribcage, his ear tilted down near the tick-a-tat scat of that spoon, developing a virtuosic dexterity that gave his instrument a magic flutter, the fingertips of his left hand tapping the spoon shaft against one of the elephant’s steel ribs.
I would sit in a nearby rocking chair in the corner and watch him, listening to the percussive anomalies he coded out, rhythmic sculptures that tilted the atmosphere to his liking. At dusk, if I turned the lights off in his room so that only twilight beams reached through the window, he made the spoon flash as if it were a silver hawk’s wing in metered flight.
Every so often the spoon escaped his feather touch, making a cadenza clang on the bars before it hit the shag carpet. Ben couldn’t reach the spoon from his perch and would hold out his hand, and hollering for its return. I liked to test his bionic hearing, picking up the spoon and making an imperceptible (to normal ears) tick somewhere on the bars. His hand always met the spoon with the ccuracy of a lizard’s long tongue snatching back a fly. Other times I made taps in various places on the bars then jerked the spoon away, tormenting him until his yell reached a crescendo, and Dad’s voice boomed up the stairs, “Give him the goddamned spoon!”
Ben’s spirit was nurtured by music, but his body was wired together with medication. He couldn’t chew solid food or swallow on cue, so his pills had to be hidden in a spoonful of cottage cheese or sour cream, and given to him throughout the day. As a child, one of his pills was supposed to control his epilepsy, and yet he still had seizures. He would be sitting on the floor, in perfect contentment, then snort in a gulp of air as he was slammed forward into half-bent submission, his good arm thrown out to the side as if yanked at the wrist, fingers splayed. His face went bloodless and his body was possessed by a rigor mortis grip. It seemed that his heart and blood flow stopped. If I touched him, I could feel his whole being quiver.
My parents could only soothe him, letting him know someone was there. Dad would rub his back and murmur comforting words, a gentle authority in his voice that let Ben know he would be all right. When the seizure released him he would fall into winsome moans, slow eerie sobs that communicated the disorienting terror he’d felt. Then, after several minutes, a post-traumatic euphoria welled up in him as the attack-and his fear-receded. He would rock his torso till his diapered rump left the floor, laughing with delirious gratitude. I sometimes careened him around on the upturned piano bench to help seal in his joy, or moaned in pain to make him forget his own.
As soon as he was old enough Ben started attending Larc Lane, a school for kids with disabilities. A special bus picked him up in front of our house every day. I didn’t like how the whole neighborhood could get a good look at him as he came and went.
The older I got, the less my brother and I had in common. It became easier to ignore him-unless I needed an audience. Then I would climb into his crib with my guitar, lean into a corner and play. Ben would scoot across the mattress and press an ear against the instrument, melding with the resonating soundboard. My irritation at having his head in the way of my pick hand always cut these performances short, leaving him whining for more. If his encore demands weren’t obliged, he would try to strafe me with his fingernails, and I’d have to shield my escape with the guitar. Perhaps the one thing we did have in common, aside from Mom and Dad, was the fact that we were both musicians.
One day I lounged on the living room floor, practicing a song called “I’ve Grown Accustomed to Her Face,” which I’d considered a lame show tune until I stumbled across a soulful guitar version of it on Rod Stewart’s album Smiler. My fingers had barely struck steel when I heard screeches of joy from Ben in the dining room; he came scooting straight at me. I stopped playing as a test, and it worked: he stopped, and then tossed his head up and started bawling out of extreme disappointment. I started again and he again spurred forward, his ears tracing the guitar’s woody croon until he could put his ear against it, laughing in delight. I’d never seen him react to one of my songs with such excitement. It was an unexpected reward for all the work I’d put into learning a difficult guitar, and arranging a tune completely by ear. I played the song again for Ben all the way through, even with his head in the way.
One frosted morning in high school as I stood at the bus stop with a smattering of schoolmates, some yuck next to me shouted, “There go the retards!” He pointed to the short yellow bus as it eased to a stop at the corner. The kids inside were whooping with spontaneous verve, heads lollygagging in all directions, some of them climbing over their seats. Ben sat in back, alone, hunched next to the window. No one knew he was my brother. He looked tranquil, unaware that he was on a special bus, rolling into a fog that would never lift. Then that same yuck started making noises like his mind was gone, and that kept everyone cracking up until our bus pulled up. I was laughing, too.
Such memories lurk in the badlands of my past, yawping from a dead tree every now and then, making sure I never forget.
With each passing year Ben mocked the doctor’s prediction of a short lifespan. But his care became more complicated. He was heavier, stronger and harder to handle, and his disabilities became more pronounced. Right before he entered his teens, Mom received a phone call from an agency in charge of a new state-run facility for the profoundly disabled. The agency person touted the benefits and programs that my brother could receive there, promising that they would help him better realize his full potential.
My parents kept me out of school the day we checked Ben, then 12, into the facility. The complex consisted of low brick buildings set on concrete, across the road from a psychiatric institution. Ben’s new residence was Building A. Inside, the rooms had whitewashed walls and squared cushion-less furniture that reminded me of giant Lego bricks. The caregivers were dressed like dental hygienists. There was no warmth to the designplace. Mom lingered, carefully telling Ben’s new caregivers how he didn’t like spaghetti or sweets, and that he especially didn’t like anything chocolate. Dad had to dislodge her. I would’ve much preferred going to school than to watch Mom weep, barely able to stand as she leaned against Dad. Then we walked out, less one.
Mom continued to cry even after we got home. I heard her tell Dad, “I have a horrible feeling about leaving Ben behind.” But he was only a 25-minute drive away, and we were able to bring him home for the weekend a couple times a month. I usually went with Mom to collect him after school while Dad was still at work. I had to steel myself before crossing the threshold of Building A. The facility was attracting severe developmentally disabled cases; many of the residents displayed behavioral problems. Some of them had to wear restrictive jumpsuits to prevent excessive masturbation.
When I got there, the residents were curious about this new presence and needed to investigate me. Mom would disappear early on to pack Ben some clothes, while I pussyfooted around the common room, encountering shuffling, diapered residents. They honked out gutturalizations and ghost wailings that echoed off the barren walls. The ones with full mobility followed me as if I were a guiding light. Sooner or later a hand would land on my shoulder or clutch my arm. I was always gentle about easing out of someone’s grips, my senses withdrawn into a protective state of numbness
As it turned out, the facility didn’t do much more than keep developmentally disabled and profoundly retarded citizens from spilling into the streets. Five years went by and my brother never progressed at all.
My own arrested development was strictly voluntary. I cut classes a lot once I started driving. I would tool past my high school and stash my hand-me-down Rambler sedan inside the pined entrails of a city park to read comic books and nap in the backseat. My textbooks warped and gathered mold in a locker wallpapered with demerits and suspension notices. I embraced my aimless cipherdom to such an extent that dropping out seemed too proactive.
I never used my car to go visit Ben, and when he was home for a weekend I barely noticed. My free guitar concerts in his room ended once I discovered it was more fun to serenade girls. After making up a couple failed classes in summer school, I did manage to graduate, and somehow got accepted into the University of Toledo. I only applied because that’s what my parents expected of me to do.
Ben was 17 when my folks had him transferred him to the Anne Grady Center, a private, nonprofit facility in Holland, OH. He received outstanding care there, and began to show improvement. He got his own bedroom, received occupational and speech therapy, and learned some rudimentary sign language. He began to respond to a question by touching the armrest on his wheelchair for “yes” and “no” answers. He started playing three-note compositions on a piano in the recreation room, amazing me with his perfect timing—something I’ve never fully mastered.
I still wasn’t exactly fond of walking the halls, but the positive energy in Anne Grady made it easier. Over the course of many trips to help Mom pick up Ben, I grew to know the gaggle of women charged with his care and watch their attachment to my brother grow. These women would become his other family, holding him close to their hearts. In time, Ben’s meds brought his seizures under control, making them both less frequent and less traumatizing. But I still never ventured to the center to visit him on my own.
I was 31 when I entered my senior year at the University of Toledo. It can takes 12 years to earn a bachelor’s degree in English literature when you’re juggling a house-painting business to help pay for your education, playing in various bands and experimenting with controlled substances. My parents had divorced but were still friends, living only three miles apart. I had been shacked up with my girlfriend for a couple of years, but when she kept talking marriage I moved back in with Mom to save some traveling money supposedly to travel.
When Ben came home for visits, I helped Mom get him out of the car. He could scoot to his room, but needed a boost getting up into his chrome elephant. Other than that, I mostly denied him my time. The only effort I made was to pop into his room and hand him his spoon, and to make sure he had good tunes on his boom box.
At UT, I enrolled in jazz lab and found myself gravitating towards a drummer, a saxophonist, and an electric bassist. We started learning jazz tunes from the Real Book in rehearsal hall and named ourselves Mr. Gone—after a classic Weather Report album. About the time we had a set list together our drummer, Mark, who always had a line on things, heard there was an opening for the Tuesday night slot at Rusty’s. Our audition won us a steady gig that would span two years. Ben was the last person I ever expected to see in the audience.
When my brother rolls in with a warm gust I’m back in sixth grade, back in the mortifying predicament of a certain Little League game, except the pitching mound is a stage this time. Ben has no idea I’m performing only a few yards in front of him. The room tilts and my chords take on a pitiful obtuse sound as my angst goes critical. I’m staring at my fret hand but seeing nothing; the music squawks at me in distorted gibberish.
Then something lets go. It’s as if a secret vault behind my sternum opens and a locked-away piece of me spills out. All the feelings I have kept hidden away about Ben surge forth—all 32 years worth. It has taken a precise numinous jolt, while being pinned against the stage wall of a jazz cafe, to give me the strength to reach inside to a place that is deep enough for self-reckoning.
The song ends, giving way to ripples of applause. Before we strike the downbeat of another tune I ask my bandmates to lay out, so I can have a few minutes to my self. They are accommodating but unsure about the situation as I leave the stage—they don’t know any more about my brother than the audience does. I approach Ben and whisper into his ear to let him know it’s me, and then wheel him up against the low stage riser, positioning his good side against my amp. I sit on the stool, take up my instrument and beginstart to play. Ben presses his ear against the amp speaker, instantly recognizing the chords to “I’ve Grown Accustomed to Her Face.”
by Christopher J.B
Articles in the William H. Macy Issue; Senator Harkin — Rethink Childhood Restraint Practice; Ashley Fiolek — Sending 2012 Out With a Bang; Humor — Trying to (Maybe) Be More Loving; Children’s Book — Rewriting a Difficult Childhood; My Brother — My Secret; China — Puppeteer With a Purpose; Long Haul Paul — New Column by a Biker With MS; DRLC — Making the Obamacare Fair for All; William H Macy — Enjoying This Stage of His Life; Geri Jewell — Last Minute 2013 Resolutions; Haitian Leader — Changing Attitudes on Disability; A Mother’s Poem — My Daughter’s Ability; marketability — An eSSENTIAL Insert; ABILITY’s Crossword Puzzle; Events and Conferences… subscribe