In what follows, I represent and analyze time as "crip time" in the context of parenting a child with disabilities. That is, I seek to challenge, reimagine, and even upend, the normalized structures that often order our lives in time and our expectations of what makes for a meaningful life in the present, and as a result, a desirable, or even possible future. Using Alison Kafer's Feminist, Queer, Crip as a foundation, in four autoethnographic accounts, recounting a typical day in my life with my 15-year-old son, I consider time as Stasis, Maintenance, (Un)productive, and Presence.
The moment I discovered I would be the parent of a disabled child time stopped. My wife and I have described the moment as earth-shattering and life-altering, like an anvil falling from the sky with the crushing weight of dashed hopes alongside a now uncertain future (Davidson and Davidson 6, 12). I used to say that in those first days and months, I "[mourned] the loss of my own life" more than for the life of my child (Davidson and Davidson 9, "Mothering Amanda" 29). That is not my outlook now and certainly was not so debilitating then as to prevent me from taking up the privilege of parenting. After all, my son, Will, was alive and needed care and guidance like every other child, and though his life started like no other child I had encountered or imagined for myself, I was willing, able, and even excited to parent him (Bérubé xii, 6, 89-90). Nevertheless, I had little sense then of the ways his advent in my life would reorient nearly everything, including my experience of time. In what follows, I represent and analyze "crip time" in the context of parenting a child with disabilities (Kafer 27). I explore the ways the present and, therefore, imagined futures are transformed by parenting Will.
Alison Kafer, in her book, Feminist, Queer, Crip, seeks a reimagination of the future that accounts for and values the lives of disabled people and the futures that disability represents to the world (45-46). She suggests that attending to issues of temporality matter because disability, most often, "destroys the future" (31). That is, historically and culturally, disability is a burden, a circumstance to be avoided and pitied. Knowledge and technology, so the controlling narrative goes, ought to be leveraged to eradicate it and futures envisioned without it (74, 87). Cripping time, then, means representing the presents, in a temporal sense, and the presence of disability and disabled lives in ways that demand a reimagining of the future, one that not only includes disability but also treasures what it offers to the collective experience of life and culture (27).
I come to disability not through bodily experience but in relationship, as a parent of a disabled child. My life, intertwined with my son's, displays the marks of disability. I share, at least to some degree, in the social stigma, the disenfranchisement, and the personal struggle (McLaughlin 403-404, "Mothering Amanda" 2-3). I also participate in the transformative process of learning to reimagine life in the light of difference, and Will is my partner in that process (McLaughlin 406, 409). Much of the struggle and the transformation hinge on cultural expectations around time and futurity.
Borrowing from queer theorists, Kafer suggests that the "figure of the Child" looms large in how we imagine and work toward the future (28). What we want for the next generation informs how we conceive of the future. We work to make the world better for our children, to protect and enhance not just our but their way of life going forward. Disability troubles these conceptions because it challenges assumptions around reproduction, productivity, citizenship, health, and legacy (29). Disability threatens what we believe we must produce and preserve for future generations. My experiences and this written account as a parent of a disabled child intervene against the prevailing and politicized narratives around "the Child."
The "figure of the Child" implies the constructed nature of childhood in general. Our culture has deeply internalized beliefs about the early years of life. We have built much on what Joanne Faulkner calls, "the fantasy of innocent childhood" ("The Innocence Fetish" 107). We seal off children's lives in a pre-adult, pre-agency, pre-sexualized status in an attempt to make sense of our own fears and anxieties in navigating a troubled world (109). We cling to these constructions of innocence in order to preserve some lasting ideal about life before the corruption and pain of adulthood. Ironically, the construction itself becomes a source of anxiety, and temporality plays a critical part. Childhood engages both past and future: a product of memory and nostalgia, and, just as the image "the Child" suggests, a source of apprehension about what children may have to face as they grow and mature. ("Vulnerability of 'Virtual' Subjects" 128-130). For Faulker, the need to protect childhood innocence makes it an object of desire — a fetish ("The Innocence Fetish" 111-112). For my purposes, her insights inform and expose my own struggles with the construction of an ideal childhood and the untypical ways my son matures, and I wrestle with the tension as the narrative unfolds.
I offer a perspective that crips time by inserting present concerns and experiences with disability into a vision of life going forward for and with my child. My experiences both manifest and challenge the constructions and expectations around childhood and "the Child." As with other parents of children with disabilities, my wife and I have forged a "new-normal," reshaping and sometimes rejecting the assumptions around what makes for "a good life," regardless of cultural discourse about the future for our child, for ourselves, and for our family ("Has the parent experience changed over time?" 153, 156, 160). I join with other parents of disabled children who seek to represent their children through the written word in order to make their children's "claims on the world as broadly and as strongly as possible" (Bérubé xix, 263). In particular, I seek to represent the ways disability transforms time and those who inhabit that time in the context of family life and parenting. My time as Will's dad is crip time.
My account of parenting Will as crip time focuses on a collision of standardized time and the lived-experience of time. As Michael Flaherty, author of A Watched Pot: How We Experience Time, writes, "the experience of personal disjuncture is made more visible by viewing [that experience of disjuncture] against the backdrop of temporal orthodoxy" (3). In considering the lived-experience of time in the process of parenting Will, I paint a picture of disabled time in the midst of standard time, Flaherty's "personal disjuncture" in "temporal orthodoxy." Often represented as mechanistic and linear, progressing endlessly as past, present, and future, I attend to the present time but in ways that complicate this mechanistic construction, since crip-present time progresses differently or does not change at all (Soldatic 406).
Time is eminently social and part of the fabric of what it means to be self-aware humans in this world (A Watched Pot 2). Understanding where and when things begin and end helps us situate ourselves in the midst of the multi-faceted social relationships that make up our daily experiences. I attend to beginnings and endings but also to the stasis in the middle, as disability often remains constant regardless of how much time passes. Time can involve agency and choice, and we often engage in "time work," seeking to shape time in order to enhance experiences that matter to us and limit experiences we would rather avoid (Textures of Time 11). Being disabled, or, in my case, caring for someone with disabilities, means bending time around the relational moment rather than adhering to strict standards or assumptions about progress and futurity. "Time work," in that sense, involves attending to moments no matter how long they last or how difficult they may seem. And sometimes, "time work" does not work. Despite my efforts to shape experiences of time, I also grapple with how modes of production, medicalization, and cultural expectations constrain time, and how these normalizing regimes wield exclusionary power against me, my son, and my family (Cosenza 156). In what ways do these time regimes present challenges for a disabled person, or his caregiver, as he navigates the world? How does life with disability challenge and alter those regimes? I offer these descriptions of parenting a disabled child in order to crip standard time, making known alternative ways of experiencing life in time and offering them, as Kafer suggests, as ways of reimagining the future (2).
Parents of children with disabilities are embedded in the controlling narratives even as we experience these normalizing structures in tension with our lived-experiences of caring for our disabled children. A daughter's lack of progression through typical developmental stages becomes a source of anxiety for her mother ("Mothering Amanda" 29). A father advocates for a linguistic shift from the word "retarded" to "delayed" because it reduces stigma, but in so doing, he fails to recognize how the new term infuses the discourse with time-laiden expectations — connecting value with futurity (Bérubé 26). Parents, as we age, remain concerned about the future for our disabled children, wondering who will protect and care for them when we are gone (Rossetti 13). How do my anxieties, efforts at advocacy, and orientations to my own future figure into my son's experience of disability? Do I disable in my parenting by conforming to the normalizing structures? In the writing process, I have discovered how embedded I am in the cultural regimes, in expectations about what makes for a "normal" life and body, and in beliefs about productivity and identity. I am exposed for conforming to the "fantasy of innocent childhood" through the ways I speak to my son and the objects with which I have decorated his room. While I seek to make sense of my relationship to these controlling narratives, to call them out and work for change, I also avoid sanitizing them without confronting why and how I am who I am in the culture I am and how my son participates in opportunities for growth and change. In the sections below, I narrate my life in the midst of the tensions, seeking to explicate and understand how my parenting disables and is disabled.
Exploring crip time is both lament and liberation (Samuels 1). On the one hand, parenting a child with severe disability is disabling ("Struggles and Joys" 265). Kafer broadens the idea of impairment to include social constraints, and I describe how the experience of my son's condition implicates me and my wife as fellow participants in the experience of disability (Kafer 7). Describing crip time means accounting for how the physical, social, and emotional struggles engender confusion, isolation, and stress ("Has the parent experience changed over time?" 160). In the words of Ellen Samuels, "Crip time means listening to the broken languages of our bodies, translating them, honoring their words" (Samuels 1). On the other hand, crip time is liberating political work, engaging culture and discourse in order to intervene on behalf of those forced out by standardized and normalized ways of viewing time in the world. As Kafer writes, "Rather than bend disabled bodies and minds to meet the clock, crip time bends the clock to meet disabled bodies and minds" (Kafer 27). My account of a day parenting Will offers several reads on crip time, both as a source of struggle and lament but also as an important means of liberation and of re-envisioning the present and, therefore, the future.
In order to explore my experience with parenting a disabled child as crip time, I offer autoethnographic accounts around four themes as they manifest in a fairly typical day with Will. I present experiences otherwise "shrouded in silence" by virtue of their occurence in the privacy of my home and with my son, and the narratives infuse political and cultural weight to otherwise personal affairs (Ellis 274). "Writing is a way of knowing," writes Carolyn Ellis on the work of autoethnography, and, as I say above, I discover more about my own relationship to the narratives and expectations around crip time even as I confront those expectations (280). I analyze these personal narratives as descriptions of time out of step with standardized, normalized time and, at the same time, constrained and shaped by those larger, powerful conceptions of time. I consider both how time disables and is disabled as I navigate the "struggles and joys" of parenting Will ("Struggles and Joys" 261). I consider specifically how each form of crip time described offers opportunity for lament and liberation. I also consider the political work each form of crip time can accomplish, reimagining how the present experience of disability informs a future worth living. The four accounts are arranged in reverse temporal sequence (crip time) and connected to individual forms or themes: time is stasis, maintenance, (un)productive, and presence. Throughout the narratives, the themes interrelate.
Beginning at the End
Will's primary diagnosis is End Stage Renal Failure. Due to a blockage in his bladder in utero, fluid backed up in his urinary tract, stretching his bladder and ureters beyond typical size, impairing functionality, and blowing out both of his kidneys. The official diagnosis already marked off Will's life as terminally, perpetually, at the end. Part of his body existed in a state of present and future failure. Born prematurely at 31 weeks and 3 days, specialists, after initial assessment of his lack of kidney function, began prepping him for dialysis. In the intervening three weeks between birth and when dialysis could begin, Will's body filled with excess fluid and tiny blood vessels in the ventricles in his brain burst (Grade 3 Intraventricular Hemorrhage), causing permanent scarring in his brain and preventing the ventricles from managing the spinal fluid around his brain. Will spent four and a half months in a Neonatal Intensive Care Unit before discharge, having endured several surgeries to address physical issues related to voiding, dialysis, and to regulate the spinal fluid around his brain. The above description marks events in my son's first days along a timeline. A diagnosis, a premature birthday, and the travails and transitions of early life are all understood in the light of time.
Now 15 years old, after several extensive medical interventions, Will's initial instability has leveled off. A shunt in his brain regulates the spinal fluid in his head and empties the excess into his abdomen. After two and a half years on Peritoneal Dialysis, Will received a transplanted kidney from my mother and, for the first time in his life, maintained "normal" kidney function. The blockage in his bladder that started it all has never been removed. In an effort to manage Will's urine production from the transplanted kidney, a Urologist performed an extraordinary procedure in which Will's appendix was removed from the end of the large intestine, attached on one end to his bladder and, on the other, to his skin just below the belly button. The appendix, still living tissue and infection resistant, now acts as a conduit between his bladder and the outside world, allowing us to catheterize him regularly to void his urine. I offer this detail not by way of excess or to engender sympathy but because this feature of his body, the continent appendi-vesicostomy, figures significantly into how Will crips time in our household.
Will is both physically and cognitively impaired as the result of these complexities. He weighs just over 60 pounds; he stands (though he cannot on his own) at about 44 inches or 3 feet 8. Will has three different visual impairments, though he responds regularly to visual cues and surprises us by how quickly he recognizes people he has not seen in a long time. He speaks in short sentences — usually 3 to 4 words like "I want Beatles" or "bedtime please" — and he loves to beat-box and sing. Will is quite content to sit in his chair and to play by himself or watch a movie, but he also likes to pat hands (play "give me five") and will give a hug or blow a kiss when he is asked. He does not feed himself. He gets most of his calories, all of his water, and almost all of his medicine through a G-tube port, located on his stomach. We also feed him pureed baby food by mouth three times a day. Baby food. One of those time-laden, childhood references that seems innocuous until I write it. Will requires pureed food, but the most convenient and readily available form comes from the "baby aisle" at the store and is designed for a 1-2 year old child. Useful because the calorie in-take and quantity can easily be controlled and monitored, the product unwittingly structures our sense of Will's place in time, though he is definitely not a baby. Below, I describe how this particular item figures deeply into our crip time world.
Will's life is far from tragic, often the first expectation of a child with such diverse challenges ("Mothering Amanda" 32). Rather, he is full of life and his laughter makes many laugh with him. I struggle to represent him, knowing that he is a person entitled to represent himself. The prospect of Will representing himself in this way, with this detail, seems like an impossible future (Bérubé xix). I question that I can somehow give Will "a voice" through my personal narratives (Tisdall 185). It is at the intersection of Will's full, happy life and personhood next to his supposed damaged future as a severely disabled child, that I seek to articulate my own version of our time together, of crip time as his parent and representative.
Crip Time is Stasis
Will's bedtime has been the same for somewhere around a dozen years. Around 8:30pm, I get off the couch, and I turn the corner and look down the small hallway toward his open bedroom door where he sits near his toy shelves. Bright and colorful plastic balls, a toy car, and a large, flat red apple, with buttons representing each letter of the alphabet sit scattered about his feet. He has two wooden blocks in his lap, but he sits motionless. With his head turned to the left toward the wall, he stares off blankly. Yes, it is bedtime.
I walk into his room and ask him if he is ready for bed. He turns his head toward me but says nothing. I kneel down and start to gather the toys around him, storing them on the shelves next to him and his chair. Will sits in a 15 inch cube made of molded plastic with the seat inset about 4 inches below the top. It is the perfect size for him and keeps him secure. He can sit up but has trouble maintaining his balance due to low muscle tone in his torso. He cannot stand on his own. The chair keeps him low to the ground and stable.
I talk to him as I clean. "Are you ready for bed?" I pitch my voice a little higher when I talk to him at night. His sleepy, hazy look draws out of me the disposition of talking to a toddler, trying to comfort more than make conversation. As I write, I am aware of my implication in reinforcing that my disabled son remains somehow embedded in a state of perpetual childhood, locked in a timewarp of innocence. It is not how I talk to my middle son when he starts to fall asleep on the couch though he is only 2 years younger than Will. I pick up the basket where the blocks go and fill it up with the couple dozen we have. They are as old as he is but are still in good shape. I ask him to help me with the two that are in his lap, and after some verbal encouragement and a little nudge of his hand toward the blocks, he complies, one at a time. "Good job, Will! Thank you." I respond.
While he is still upright in his chair, I prep him for catheterization. He starts to grumble at this stage of the routine, knowing that his comfortable bed is close. Catheterizing him is our crip time version of using the bathroom before bed. I will explore the implications of this process in the sections below.
After crip-cath-bathroom-time, I pick up Will and lay him in bed. He complains while I change his diaper. Though his urinary tract does not function normally, the other side does! Hair marks his age and puberty, but the process has not changed since birth. I have diapers and wipes and small bags for trash close at hand. He squirms as I hold up his legs and then pull the new diaper up around him. I reach in the drawer of his dresser and pull out some PJs. I pick a short sleeve-shorts combo with sea creatures as the fall weather is still quite mild. The PJs reflect the theme of his room. We painted the walls a bright blue and filled them with pictures, posters, and small carved replicas of fish and other tropical ocean life. From the ceiling hangs a large colorful, posterboard parrot and two mobiles — one of sharks and the other of glow-in-the-dark planets. The decor represents our vision of Will as full of life and wonder, like the ocean and the sky. It also fits well with the blankets and stuffed animals from one of his favorite movies, Finding Nemo, released the year he was born.
After a change, PJs, and our evening prayers, my wife and I — she has joined us from the other room managing homework and chores for our other two boys — swing the rail up on his bed, and lock it in place. Will sleeps in a regular twin-size bed, but I have modified it so that it stands about a foot higher off the ground and has a hinged rail that locks into position like a crib, so he cannot roll out at night. I switch on his nightlight — a turtle that projects stars on the ceiling — make sure the monitor is on, and I turn on his music. Every night Will goes to sleep listening to the soundtrack from A Charlie Brown Christmas by the Vince Guaraldi Trio, which means that every night Christmas music fills our house. Holidays are full of time references: traditions that anchor us to our family histories, memories both pleasant and uncomfortable, anticipations of the future and, for some, rest or reverie in the present. Will makes every night part of holiday-time.
I lean over the rail to say goodnight and Will commands in a whisper, "kiss me," and I happily comply with a kiss on his forehead. His mom does the same. At this point, we leave him to his music, turn out the light, and exit the room.
The routine with Will, ours for over a decade, engenders ease and familiarity. It construes time not as passage but as place — locating in things, physical and present, rather than in what changes or will come to be. I am reminded most often that I live in stasis when I clean up Will's toys — whether the ones in his room or the ones by his chair in the dining room. His preferences have not changed much in the last 10 years. He loves blocks and other small, hard toys that he can bang together. He likes noise making electronics like toy phones, pretend mp3 players, or other devices that sing. He plays with string beads and carved wooden puzzles that I see in the toddler classroom at church. He has a particular fondness for music. We discovered that he enjoys musical greeting cards, and he will keep them intact, opening and closing them over and over again for months until the battery wears out or the cardboard hinge of the card finally breaks.
Crip time, sometimes, does not change but exists in a kind of stasis. Living with a person with disabilities like Will's means settling into a way of living that abandons the expectation of development and progress as construed in our culture. Will is not progressing from grade to grade in the conventional sense, learning his multiplication facts or, at his age, worrying about a geometry test. He has not progressed from swinging a bat, like his mother and father both did as children, to wielding a pencil or computer keyboard, like his mother and father still do today. More generally, he has not moved from acts associated with play to those associated with skills and work. He is not learning how to drive or starting to think about college. He is not looking for a romantic relationship. Will quite contentedly still plays with the toys, watches the movies, and lives in the routine that he has been living in for most of his life. Assumptions about production and maturity do not apply.
Crip time as stasis means that we, as his parents, exist in tension with the expected timeline of progress and development. Life for us has not moved past a monitor beside the bed. We have never entered the stage of increased flexibility in our schedules as our children grow more independent. We are not preparing for all those milestones and stereotypical markers of success: a first job, graduation, college, marriage and, perhaps, grandchildren — at least not with Will. We experience crip time with Will in tension with "normalized" time for our other two boys, and their time gets "cripped" too. Our middle son occasionally has to meet Will at his bus stop in the driveway while we transition from work to home. Their activities and schedules, choices about what we can attend and what we can afford, are all shaped by Will's status as the oldest yet 'youngest' child in the house. We do not have a savings account for him and cannot leave any assets in his name as that jeopardizes his status for assistance once he reaches adulthood. While our peers are changing their car insurance policies, we are still changing diapers. This makes for a new way of viewing time and our circumstances.
I am aware of the fraught description above. Just like the baby food, there are markers in Will's life and in my writing that embed him in a perpetual state of childhood. My bedtime tone of voice, PJs, a nightlight, diapers, mobiles, a crib, and a monitor all manifest constructions of childhood. These items configure childhood as a time for discovery and play but also as one that needs protection and surveillance ("Vulnerability of 'Virtual' Subjects" 129-130). His developmental disabilities complicate the construction by affording us, as his parents, the "opportunity" to extend Will's childhood in seeming perpetuity. We seek some measure of stability, but, possibly, we also miss or ignore his developmental changes and efforts at personal agency. In making these personal narratives known, I also call attention to the reality that we live outside the controlling expectations around both a "normal" childhood and a "normal" mind and body (Tisdall 183). At the very least, the continued existence of these items and ideas in my interactions with Will manifest the time-laden tension I experience as his caregiver.
Stasis can be difficult — a cause for lament. Confronting our own shortcomings as parents is difficult and confusing. Beyond the cultural expectations, there are still material and physical struggles in caring for a child who seems to never get older. While he stays relatively the same, we age and our bodies feel the effects of the physical effort required to care for him. I can still carry him in the house but my shoulders and wrists hurt when I do. My wife still carries him, but on a limited basis. Only I can get him in and out of the bathtub. We resonate with the concerns of other parents who express anxiety about a future for their disabled children — a future where we are no longer able to meet the physical demands of caring for him (Rossetti 13). For now, we seem to exist in a forgotten middle ground where accommodations for the home or assistance with transportation are aimed at the disabled elderly or toward disabled adults seeking to live independently. We too have those needs as our son has not progressed from crawling to walking to running. To transport him almost anywhere requires wheels. Like our son, we must stay the same, working with the same routines, constraints, and demands in order to care for him.
Stasis, however, can also be a place of equilibrium or calm. We know what to expect with Will. We generally know what he likes and enjoys. Those old wooden blocks and cartoon movies continue to captivate him. Puberty may challenge the very notion of stasis but not yet ("Mothering Amanda" 29). Like many families with disabled children, as mentioned above, we live in a "new-normal" and bend the narratives around our particular circumstance ("Mothering Amanda" 33, "Has the parent experience changed over time?" 160). The sounds of A Charlie Brown Christmas are part of the soundtrack of our lives. I often think of Will having a special connection to Charlie Brown, the perpetual 2nd grader who never gets older for all the experiences and lessons learned and who in failure and personal misery spreads determined cheer and optimism through a broken smile. In parenting Will, many of the expectations around development seem irrelevant. We have had to reframe what makes for a good future and a life worth living, one that values and makes much of the present ("Mothering Amanda" 33).
On a recent trip to the grocery store, I piled the shopping cart with stage-two baby food for Will since he only eats pureed food by mouth. As the baby food packages slid across the laser scanner, the gregarious checker asked, "how old is your baby?" "Fifteen," I responded. He chuckled, suspecting humor in my answer. "Oh yeah," he replied, "months, right?" "Nope, years," I answered back with confidence and some excitement to engage him in this bit of crip time. But he shut down. Embarrassed and a little shocked by the news, he put his head down toward his work. I tried to reassure him that everything was fine between us and with my son. I even pulled out my phone to show him pictures, and he lightened a little. But the realization of some other way of envisioning life for a child in time was a bit more than he could take in at that moment, and I let it pass. I believe a moment like this represents a subtle kind of political work that crip time as stasis time can do. Hopefully, it will help the cashier envision new, different, and brighter futures for people like my son and the parents and caregivers who represent them.
Crip Time is Maintenance
There is a small checklist of items that must get done for Will during the dinner hour: "fed, med, drained" is how I shorthand it in my head. Will's dinner time begins around the same time as everyone else's in the family, but it depends — enter crip time. We have to manage the moment because the timing matters. Will's dinner consists of two foundational parts, a bag of liquid formula and two tubs of pureed food mixed with cereal. Each item is regulated by a dietitian who watches over Will's caloric intake from afar. She works for the nephrologist (kidney specialist) who acts as the manager of Will's medical care. When we take him for check ups — usually 4-6 times per year — the dietitian works with the doctor to determine the ratio of liquid to solid food based on the desired caloric, nutrient, and metabolic balance.
Will's food-bag, as we call it, gets filled to 1100 milliliters of formula and water, along with added salt, protein powder, and, every other day, a laxative. We connect it to a pump that regulates the flow and dose over an hour. He gets half of the bag for each meal. At dinner time, we refill the bag for the evening meal and an overnight feeding while he sleeps. I hang the bag on a hook I installed in the cabinet behind Will's chair in the dining room. The pump sits on the middle shelf of the cabinet.
After setting Will up in his chair, which is more or less a large high chair — complete with sliding tray in front (crip time as stasis) — I "plug him in" to the pump. That is, I attach the output line of the bag and pump system to his feeding tube, which attaches to the port on the skin of his stomach that provides direct access to his stomach. It is a process that has been a part of Will's life since he was born (stasis). I check the settings on the pump, hit run, and leave it to do its work. It will alarm when it has finished the dose. Our other two sons, Will's younger brothers, both know how to turn it off or check for problems if it alarms early — commingling Will's managed-dinner time with theirs.
I retreat to the kitchen to make Will's mouth-food as we call it and to prepare his medicine. We call the corner of our kitchen furthest from the dining room door "the pharmacy." The two overhead cabinets in that corner contain most of Will's dietary and medical supplies. Tubs of food and cereal, cans of liquid nutritional formula, prescription medicine, oral medicine dispensers (syringes without needles), supplies of sterile water and saline for the nebulizer, over the counter meds, small bowls, spoons, cups, bibs, vitamins, and an assortment of other medical and dietary supplies sit inside these cabinets. On the counter underneath the cabinets are three tubs labeled, "AM," "PM," and "NIGHT." They contain syringes pre-drawn with medicine — some liquid and some pills — for the whole week. I try to draw meds for the week on Saturday, a small gesture toward a limited, cyclical, and managed future.
When we first brought Will home from the hospital after his kidney transplant, the medicine regime was so overwhelming and dynamic that I had to make a two page spreadsheet-checklist each week to assure accurate dosage and frequency. If my wife and I dare to take a trip out of town and leave Will with family, I still make up a checklist because there are too many details to remember. For my wife and me, we have internalized most of the regular procedures though we try to remain vigilant by cross checking. We resist the urge to be offended when one asks the other about what has and has not been done for his care each day.
Will's dinner includes two tubs of pureed food, a tablespoon of oatmeal cereal, and three capsules of seizure medicine that I pull apart by hand, dumping in the powder and mixing it in the food. Will gets three other meds with dinner: two sets of tablets that can be delivered through his tube once dissolved in water and another liquid medication. I return to the dining room with these materials to continue the process of checking off the small list in my head. Though, for simplicity, I only speak of myself, my wife and I share these tasks alongside managing homework and late afternoon activities for our other sons and often while preparing dinner for all of us. Either of us can take Will through any part of his day on our own if circumstances require it.
Depending on the timing of when all of this comes together, I determine whether to proceed with feeding him by mouth or whether to shift gears and catheterize him — what we call draining him. Usually, I drain him first because the nurse at school drains him early in the day, so he often has a lot of urine in his bladder by dinner time. Will can hold more than a liter of urine in his oversized bladder without showing any signs of discomfort though it makes us all, and especially his nephrologist, uncomfortable to let it go that long. We try not to do that. These considerations notwithstanding, he'll regularly produce three quarters of a liter of urine between lunch and dinner time, and we monitor these details closely both to make sure his kidney is functioning properly and to ensure he does not have too much at one time. I catalog the amount in my memory as it often comes up in conversation with my wife.
After draining him and washing my hands — by this point in the process, I've washed my hands 2-3 times — I return to the dining room, to the chair in front of Will's chair to feed him and give him his medication through his feeding tube. Feeding Will by mouth has always been an adventure. We have spent many days in therapy and in personal trial and error seeing if he could learn to chew and manage more complex foods. Unfortunately, his gag reflex has grown incredibly sensitive and his aversion to trying anything new has overwhelmed us into the status quo. He usually eats his two tubs without much complaint. At some point, hopefully before it completely finishes his dinner dose, I pause the pump to deliver his medication through the tube.
When the pump alarms, signaling the end of his dinner routine, we often leave him in his chair to play and remain with his family while we sit down to eat. The whole process takes an hour. Any other activities, preparing dinner for ourselves or traveling to events outside the home, have to be managed in light of how long Will must remain in his dining room chair.
Crip time is maintenance time in many senses. Hopefully clear by this description of one hour of each day in my household, our time with Will can be highly regulated and controlled — i.e. externally maintained or managed. Kafer writes of "curative time" — a controlling way of construing disability as always requiring medical intervention (Kafer 27). And other scholars warn of the "medicalization of everyday life," linking systems of control to discourses around health and ability that further marginalize the disabled (Oliver and Barnes 88). Our lives as parents of a disabled child are highly governed by the needs, practices, and expectations often dictated to us by the medical community. Even our personal terminology, such as mouth-food and draining him, suggest a reorientation of activity around the medicalized processes. Crip time may include a sense of lost agency and control, as maintaining open lines of communication and trust with needed medical professionals means reconfiguring life around their demands and regimens (87). We are pressed in ways that disable us ("Struggles and Joys" 265-266). The time constraints not only change the way we live, they also produce emotional and physical strain.
Maintenance time works on us as we work with him. My wife comments that she is so shaped by the regimen of his care that when she is at her job, she still thinks of what should be happening for Will at that moment. Is he getting his fluid? Does he need to be drained? As I said above, we have grown somewhat immune to the annoyance of repeatedly asking these questions of each other. The level of sophistication of his care often means we are the only two people who know how to care for him. Training others is daunting and, unless the individual integrates into the regular rhythm of care, small changes require retraining. Both sets of grandparents and all our siblings live out of state. Finding babysitters who are able to manage the minor details like changing him or putting his food-bag in the fridge after his pump stops takes persistence and time, usually making it easier to stay home.
Crip time as maintenance also means we wrestle with the degree to which we contribute to an over-medicalized life. What is necessary, helpful, or otherwise? His nephrologist would prefer we drain him again in the middle of the night. Does interrupting our sleep and his, every night, enhance his well-being or do harm? Do we avoid interventions for the sake of our convenience? The pull of medicalization is powerful and insidious. Oliver and Barnes suggest that medicalization reinforces the oppressive discourses that separate the world into able-bodied and disabled as we increasingly depend upon medical professionals to make judgments about our fitness and our fit into a normalized world (Oliver and Barnes 88). These professionals suggest medical interventions, prescribe drugs, and evaluate health and well-being but may have little knowledge of the daily impact of those decisions. We, as his parents, exist as mediators between the structures and the individual life and care for our son.
Crip time is maintenance time also in that we, as his parents, are integral to maintaining his health and well-being. This may be stating the obvious in so far as parenting in general goes, but our role on a regular basis takes on life and death significance. His medications prevent seizures, keep his immune system from attacking his transplanted kidney, and guard against urinary tract infections. In this sense, medicalization of our lives offers an opportunity to enjoy stability in our new-normal. It makes the future possible.
In that light, crip time as maintenance time has stretched and grown us in positive ways. Will's disabilities ushered us into a new and relatively sophisticated set of skills, both as parents and as caregivers for others with illnesses and disabilities (Bérubé 90). Along with an enhanced personal lexicon of medical terminology, we have more emergency room experiences than we can count, understand the trauma of a devastating medical diagnosis, and have a fairly thorough knowledge of how to navigate insurance, assistance programs, and hospital systems. The pharmacists know our names. We have access to others with similar stories and experiences, affording the opportunity for developing community and solidarity around our common interests and experiences. My wife and I have both pursued advanced degrees in subjects that align with our growing body of knowledge and experience. These new opportunities give us purpose and good work to do beyond the daunting schedule of crip time, maintenance time, with Will.
In both of Will's backpacks (he has a general travel bag and a school bag) and stored on our computer for use when needed, we maintain a document detailing his medical history. We carry it with us in case of emergency but also as testimony to the political work crip time-maintenance time can do. After several hospital visits, we grew tired of answering the same questions over and over again to each new professional who walked through the door. In an emerging medical crisis, often exasperated and tired, we have little mental energy to focus on anyone other than our son and his immediate needs. Therefore, the medical history document, now two pages in fine print, offers a comprehensive answer to those questions, alleviating the stress on our limited capacities and providing the medical team with the information they need to help Will. "Where did you get this?" we often hear from an amazed nurse or doctor. "This is so helpful," one nurse said on a late night visit to the ER. Crip time has helped us intervene on our own behalf, for the care of our son, and in dialogue with the medical community. In that sense, maintenance time also means working to maintain the well-being of all involved in caring for our disabled son, providing for a better present and opening up future possibilities as medical professionals see the value in our approach to his medical care in a crisis.
Crip Time is (Un)productive
To further crip the narrative of my life as Will's dad, what follows presents the theme of (un)productive time in dischronologized vignettes rather than in a larger, single narrative. Along the way, I reflect on ways to lament and celebrate this form of crip time and consider its political power.
Will gets home from school on the bus around 3:30pm. Someone has to be home in the afternoons to welcome him and carry him in the house. Most of the time, lately, that has been my job. We use nouns like "job" in many different senses, but I have grown to see this moment with Will as not only part of my job, as in my duty as his parent and caregiver, but also as my job, as in vocation. In partial response to the question, "What do you do?" I often say, reflecting what I just wrote above, "someone has to be home to get Will off the bus." The question reflects the typical production-centric frame used in getting to know someone — how our culture has conflated personal identity and work. My response reflects a reframing of that implied expectation. As Will's dad, the arrival of the bus transforms expectations around time and production.
The bus's arrival signals an end and beginning of its own. It ends his school day, governed by the external structures of the educational system and societal expectations that conflate citizenship with economic productivity. It begins a far less structured afternoon. Julie Cosenza unpacks the concept of "chrononormativity" and argues that cultural institutions, like the educational system, function to "discipline bodies" around capitalistic work schedules (Cosenza 158). The systems nurture and naturalize assumptions that connect the life worth living to productivity. Time acts as a particularly powerful construct of control, "to compel bodies toward the impossible accomplishment of normativity" (162). As his day in chrononormative time at school ends at the end of our driveway, a more unproductive experience ensues.
Will rides a big yellow bus with a lift gate in the back. The driver pulls right up to our driveway and the paraprofessional on the bus moves Will into position on the lift gate-ramp while the bus driver and I hold on to his chair from below. It is generally a pleasant reunion — unless it is raining — as Will's chair slowly descends from the bus to the ground. I pat him on the leg, ask him about his day, tell the driver thank you, that we will see her in the morning, and we push out of time governed by the productive expectations of the educational system.
I carry Will in the house and set him in his chair in the living room, near a small stash of toys. After unpacking his bag, I put the food-bag in the fridge and check for anything unusual or exciting sent home by his teachers. I hang the bag in the hallway nook and return to the living room to check on Will. "How was your day?" I ask, but usually do not get a response. "What did you learn?" "Who did you see?" In response to these questions, Will usually just smiles or asks for a toy. Will is tired and very uninterested in reflecting on the school day. He does not typically verbalize an evaluation of his experiences. I, on the other hand, am locked in an expectation of productivity. All of this time has to mean something. It has to be going somewhere, producing something.
We are incredibly grateful for the school system and the accommodations it offers our child. There is tremendous dignity as the parent of a child with disabilities in being able to participate in the chrononormative structures, as contradictory as that sounds. It is not my intention here to unpack the benefits or problems of the educational system and its interaction with disability. I only reflect on it as one way crip time creeps into my house through the back door as Will rolls up. These structures, according to Cosenza, "produce a 'natural' sense of belonging," and I find that way of thinking about the world almost inescapable (156). As we sit in the living room face to face, Will and I engage the dilemma of how he, and, therefore, we move in and out of productive time and into a crip time way of relating to our life and capitalistic culture.
On Monday morning this week, Will missed the bus into school because I had to take him to a clinic to get lab-work. Having a transplanted organ means lots of monitoring through regular blood tests. Will has been stable for a long time, and the temporal distance between these visits has grown. Lately, with the onset of puberty and some weight gain, we are at the clinic more often. The trip this morning means packing Will in the van, along with his chair and school bag and heading across town at the time I would normally be starting my work — in this case, writing this paper. The trip takes 20 minutes through downtown, and we arrive on time. After a short wait in the waiting room — another profoundly ambiguous space where time becomes crip time, presents and futures collide and get remade — we head back for the blood draw (Davidson and Davidson 8). Will is a good stick, as they say. He complains about every other form of patient-medical professional contact. His nephrologist will not go near his ears. Even the mention of checking them with an otoscope throws Will into a tantrum. But Will quietly endures the needle and tube. Less than ten minutes after leaving the waiting room, we are back in the van and headed toward his school.
There are no shortcuts to Will's school. It is on the other side of the largest lake in town, and it takes another 20 minutes to make the drive. I am now around an hour into my morning. The stop at the school does not take long. I sign him in, wait for his teacher to meet us, and watch him roll away. I quick-step it to the car for the ride home. As I pull in the driveway an hour and a half after Will and I left, I am glad it only took that long. I still have plenty of work time before the afternoon bus turns the corner and heads toward our driveway. However, in a flash and a thought, I am derailed. I forgot to give him the medicine that we held back because of the labs. I left it in the backpack with his food at school. This hiccup will not affect the lab work, but it means I face the choice of returning to the school to administer the dose (no school personnel can do it for me) or telling myself he can make it through the day without it. In a state of stress over losing more time, productive time, for my work, I choose the latter.
Expectations around productivity are powerful. They are one of the main concerns of and source for critical theorizing about disability in our culture (Oliver and Barnes 16, 62, 129). I am a part of the culture and the above testifies to the power of the prevailing pull toward work as the primary source of individual value. As I have experienced the time cripping responsibility of caring for Will, I am shaped by new ways of living in and viewing time, but that time-work on me is not easy. Before returning to the academy, the job I had came with the expectation of meeting people outside of their normal working hours. Most often, that meant conducting early morning meetings. However, the morning routine in our house demands that my wife and I guard that time, as it takes all our focus to organize Will and his two younger brothers for the day ahead. In other words, I cannot make early morning meetings on a regular basis. As a result, in my former job, I often had to negotiate the consequences of failing to meet these expectations. Will has a new teacher this year, and she has started sending home weekly homework. "It's just optional," she told me with a sheepish smile, and we treat it as such. But it testifies to something else. Namely, we, as a culture, assume the best way to improve our time is to make it more productive.
Back in the living room with Will after school, I face the reality that the best framework for the moment is to abandon belief that productivity equals value. He just wants to play, and all I can do is sit with him. Will's backpack occasionally comes home full of his work — various projects with toilet paper tubes or cut outs of animals or numbers, whatever they are working through at school. But rarely does something have the marks of his hand on it ("Mothering Amanda" 25). There are no crayon drawings or short stories to put on the refrigerator as Will does not use tools or make things in the conventional sense. If something came home with teeth marks in it, then I would know it was his! Seeing crip time as (un)productive means I pay attention to him and not to what he does (crip time as presence). These moments reinforce Kafer's desire to make much of the present in order to re-envision the future (Kafer 45-46). What does a future look like in which we throw off the tyranny of production and live and work out of other powers?
Will has a swing in the front yard, hanging from the massive live oak that covers the front of the house in shade most of the day. Our house faces a three-acre city park. It is an enviable location. Will's swing looks out across the park, and he asks often to go and sit in the swing, which requires me to carry him there and to sit with him. Not many people use the park. There are a couple regulars who bring their dogs, but, other than that, the park remains open to the few residents of our small neighborhood off the main road through town. Will sits there and enjoys the rocking motion back and forth. He laughs and pushes my hand away from his back, where I keep it to steady him or catch him if he rocks too far forward. He makes beat-box noises with his mouth, and he asks me to do the same. The political work of crip time as (un)productive time involves seeing the value of Will's view of the world from the swing. As a mostly stay-at-home father, whose spouse works outside the home to provide the primary family income, my struggle with chrononormativity includes my own ingrained, gendered vision of how my time ought to be spent. Rather than sitting in the swing looking out over three acres of grass and trees, I, so the controlling narrative goes, should be contributing substantially if not completely to the family income (Coskuner-Balli 27-28).
But Will's vision of time well spent challenges mine. The present for him requires no measure of success, demonstration of ability, or standard of productivity. The setting sun casts long shadows across the grass in the park. The breeze washes our faces in the coming cool of the evening, and a neighbor walks by with her dog. She smiles and waves. I kick my feet back and forth to keep the swing in motion and Will laughs as his body sways, and we start all over again. If more people saw the world like Will sitting on his swing, it might encourage a future where the park offered more for more people. For me, it means that everyday I learn to see value as separate from production. In that sense, crip time as (un)productive does not mean we produce nothing, but it changes who and what is valuable in light of that work.
Crip Time is Presence
The morning begins like the evening ends. Will is in bed, and there he remains until someone helps him out (stasis). In reality, the morning routine is far more regimented than the evening as our time is sandwiched between a reasonable wake up call for Will at 6:45am and when his bus arrives at 7:56am (maintenance and (un)productive time). I highlight here how each of these themes as crip time overlap and interrelate. They are all part of the tapestry of time with Will which points me to the final theme I explore. Crip time is time spent with my disabled son. Despite the time crunch of the morning, each phase and activity requires meaningful engagement rather than looking away in disgust or hovering in indifference. Parenting Will crips time as presence because he has no future apart from our relational engagement. Several moments in the morning bustle highlight how time becomes presence.
I start to wake up Will between 6:30 and 6:45am. In this process, he is not much different than a typical teenager, often requiring multiple reminders and nudges before he gets moving. Timing and schedule require, however, that we get moving soon, but moving is still slow. I ask him to roll over, but sometimes he needs help. "Straighten your legs," I tell him. Due to low muscle tone and shallow hip sockets, Will is extremely flexible and often, especially in cooler months, sleeps with his legs tucked up underneath him. Despite corrective surgeries on both sides, Will's hips pop out of socket, especially in bed when he folds up. By straightening his legs, Will can reset his hips without much trouble or discomfort, and I can make sure I am not going to hurt him when I start moving him to change his diaper and dress him.
The "straighten your legs" moment crips time because I must wait for him to act. Will understands many things we say, but his response time is often much slower than expected. Parents, speaking generally, expect their children to respond quickly to their instruction. Interpersonal communication with others avoids long pauses. Conventionally, we call them awkward pauses. But with Will, pausing is absolutely necessary. Giving him time to respond means waiting.
Crip time as presence in parenting my son values the time it takes for him to respond to the relational moment. Kafer suggests that the association between extended time and disability is well known (Kafer 26). But she goes on to write that crip time in this sense is "not just expanded but exploded," challenging the standard, normative expectations about the way time works, not just how long something takes (27). For Will, waiting involves more than merely adding seconds to the countdown clock; it means slowing down and allowing him to define the pace. I can put his hip back in place, but it hurts him if I have to do it. Being present with him means letting him determine the time it takes for him to accomplish what he needs to accomplish.
Feeding Will has always been an adventure. Will moves his head back and forth a lot. We marvel that he must have the strongest neck muscles around given how consistently he works them. I put Will's food on his tray — two tubs of pureed food mixed with oatmeal cereal. I plop his bib on his head haphazardly and ask him to put it on, and I wait. He fumbles with it, finds the hole and successfully pulls it down, avoiding his glasses as he does. This is another moment of waiting where Will knows best how to get his own work done.
Feeding him means holding the spoon full of food up in front of his head and waiting for him to stop moving back and forth and to open his mouth. I wish I could say I was patient all the time, even most of the time. But in the right frame of mind, it is another moment, really a collection of moments, of letting time slow down and of just being present with Will as he works with the mind and body that he has.
There are other moments in the morning like this. Helping him with his shoes means waiting for him to extend his foot. Changing his shirt involves letting him release his arms. I ask him to put his toys away in the box next to his tray when it is time to eat. Letting him respond and act crips time as I refrain from intervening with my able, impatient body and agenda.
Perhaps, this theme might be more aptly termed waiting. Afterall, along with what I have described above, the morning routine involves waiting in front of Will while I drain him. Sparing additional details regarding collecting Will's urine while he sits in the dining room (cripping space as well as time!), draining Will, in a simple sense, involves me sitting in front of him and waiting. I also wait with Will in the driveway for the bus. In both places, dining room and driveway, my mind often drifts while I sit there, and I start to ponder the day ahead, i.e. the future — getting caught up in productive time. But when I catch myself and regain focus in front of Will, I return to the presence of the present with Will, and that is why the naming matters.
Crip time as presence reflects on the positive, valuable, and liberatory quality of what Will as a person brings to the present moment and to my life. Like (un)productive time, crip time as presence means that I have the privilege to sit before him and to let him shape the time we spend together and to enjoy how that encourages me to reimagine my present and future, particular in relation to the work I do as his father and in the world. But unlike (un)productive time, presence is relational time, person to person, not person to the cultural expectations. Seeing the constraint of his needs becomes an opportunity for relational transformation, as my need for a profoundly different way of viewing time and futurity confronts the reality of his disabled body. I spend time reflecting on these things and writing them down in order to both make sense of them in the light of prevailing practices and to reorder my own life and work around and with his, to embrace his time as my time too. Therefore, I stand with Will, not only in our lives together but also in this essay — making much of these moments and manifesting the work of presence-crip time as a kind of political work in me and, through these stories, in the world. These personal narratives give my experiences a kind of political weight and exist as a testimony to the value of the present and the future with Will (Ellis 284).
Ending With Hope of New Futures
Crip time is stasis, maintenance, (un)productive, and presence and much more. I have not touched on many things, including how crip time redefines gendered expectations for mother and father in parenting a child with disabilities ("Struggles and Joys" 274). Also, writing autoethnographically means these stories as research come with the limitations and privileges of my status as a white, middle-class American man (Ellis 275). I cannot, in that sense, speak to crip time in the context of poverty or racial minority status, though I welcome those clarifying and challenging stories. Approaching the subject like this, as storytelling, as manifest in the dynamics of the narratives of life, means conclusions are as messy and open-ended as the stories themselves (Ellis 283, Cosenza 162). It crips our expectations of how time unfolds in scholarly endeavors, challenging norms of efficiency and precision, disabling neat and tidy conclusions, and prioritizing the present in the ongoing conversation about the future of disability and disability scholarship .
In the above narratives, I offer perspectives about time in parenting my disabled child and how that time bends and, sometimes, breaks standardized, normalized time structures. In the process, I discover how I too uphold those structures and how Will's work in my life, as my personal agent of crip time, is far from complete. These times, crip time, involve struggle but also celebration, lament and liberation. I offer them in hope of better futures for the disabled and those who care for them.
In the middle of the night last night, in passing through one of those sleep phases where I am more aware of my surroundings, I noticed I was cold. In that moment, my mind turned to Will. He has trouble keeping the covers on and his room is the coldest in the house. After a brief debate with myself over the thought of losing more precious sleep-time, I got out of bed and crossed the living room to check on him. The wood floors creaked under my cold feet. I grew steadily more awake, less apt to fall immediately back to sleep, as I crossed the living room and turned down the hall to his room. Sure enough, coming around the bookshelf at the foot of his bed, getting close enough to see him in the dark, I found him huddled in the corner of his bed without any covers. I grabbed the blanket and sheet together, straightening them out evenly over the mattress as I pulled them up to his shoulders. As soon as I did, he stretched out in a small gesture of confirmation and gratitude. My time in that moment was crip time: stasis, as I care for my son much like we did when he was very young; maintenance, as I grapple with the constraints and struggles of his condition; (un)productive, as I too lose sleep in caring for him and feel, even now, those consequences; presence, as I stand over him and with him in the middle of the night, knowing that we are both better for it.
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