This is how I write.  I find a friend or a casual acquaintance who is able to type quickly and understand my sometimes slurred or mumbled speech and pay them to transcribe my thoughts accurately and fluidly.  I have used speech recognition software before, but the accuracy of transcription, punctuation, and the difficulty of having to think so far in advance makes this technology difficult for me to use and ill-suited to creating lasting work.  I am able to type myself, but only using the index fingers of each hand and this is a horribly inaccurate, slow exercise.  Writing, for me, is a collaborative process, though not a collaboration.  The words that appear in any final paper, publication, or blog, are my own, even if they have been typed by fingers that are not attached to me.  This system was evolved from my public education days, in which my aid assumed a scribe role and took dictation from me.  I much prefer the freedom and final authority that come with paying someone to perform this activity, because it ensures complete creative control and also solidifies the existence of a healthy incentive for my scribe to show up when he or she is told (or somewhere thereabouts).  My undergrad career in literature and philosophy involved a lot of reading and a lot of writing.  Final exams were always typed by students working in the Disability Support Office of Canisius College, my undergrad institution.  However, on particularly long projects or on those projects for which I felt a strong affinity, I made sure to hire someone I trusted implicitly to get the job done.

     This is an incredibly intimate relationship.  I have to trust the individual to copy my thoughts as I articulate them and to have the patience to read back dictated passages, sometimes several times. Throughout this process, I have to mentally sift through the inaccuracies, repetitions, and rash generalizations that occur in my writing and distill some of my rambles into a cogent, engaging product.  This phase of writing makes me feel vulnerable and naked.  All of my shortcomings as a writer are present: my preferred phraseology, the abhorrent homogeny of my sentence structure, and my tendency to embrace verbose prose where simple clarity might be better suited to the task.  (See what I did there?)  I do not want the messy details of my process and those very shortcomings to become public knowledge.  I am not naïve enough to believe that even people who are aware that I use scribes think that the final product flows out of me perfectly on the first attempt.  I may spend ten minutes struggling to carefully compose that first engaging sentence, anecdote, or precise thesis on which the development of the work depends.  Beginnings are hard and without a solid foundation, I cannot move forward, whether the task is purely for pleasure or some perfunctory task for an exam. 

     Standardized tests which involve substantial writing sections are always stressful for me because the scribes are complete strangers and do not have the patience or familiarity with the process that my trusted stable of hands does.  The time constraints of the tests are difficult but my anxiety in these settings comes from my embarrassment over the process and a lack of trust in the aptitude of the scribes to transpose my thoughts in a way that allows me to establish a progressive rhythm.  Few things can throw me off more than building to a crescendo of thought only to be stopped in the middle and asked how to spell a word or if a punctuation mark is needed.  I always proof my spellings and punctuation and am glad to provide a scribe with that information, but not in the middle of an important train of thought.  I understand the need for “objectivity” in standardized tests and the worry that some exam facilitators might have if I used one of those pairs of hands to transcribe an essay question, insofar as the suspicion might be that the scribe is aiding me in the actual composition.  To answer that concern, I would only invite the supervision of a third member so that they can see the process and be assured that I take all precautions to maintain academic integrity at the highest level.

     To date, the largest and most exhausting manifestation of my system in an academic setting was the composition of my undergraduate senior thesis on the works of David Eggers and the themes of family and societal breakdown found therein.  This was a sixty page project, the writing of which took a few seasons to complete.  My scribe and I met at several libraries for hours on end, writing and rewriting the sections and adding more research as it came along until I finally accomplished what I had set out to do.  I vastly underestimated the complexity of the project, the amount of time the revisions would take, and the extent to which my mental fortitude would be able to keep me working.  It was the most intellectually exhausting experience of my life up to that point, but it did teach me some valuable lessons about the shortcomings of my process.  As much as I am aware that I am not capable of producing brilliant insights in one single outpouring of dictation, I acted under that assumption too often during the Eggers project.  I think that I was motivated by such a desire to get it done and slay the dragon that I rushed unnecessarily through some much needed preparation time.  I think on some level, it remains a mystery to me how others write, and while I am certain that they go through just as many mental revisions as I do, I think I am also trying to keep up with the imaginary wunderkind who can sit down and pound out 15 pages flawlessly in an afternoon.

     I have always suffered from romantic delusions about writing and writers.  Any one of us who engages in the craft of constructing narratives, whether analytical or creative, wishes to one day single-handedly discover that thing which will carve out our place in history and leave a revolutionary legacy for generations.  We wish to go into the study as mere mortals and emerge with a work that will proclaim us: genius.  This superheroic transformation does not exist and disregards the work of writing and the beauty that can be found at the last stages of exhaustion, right before a breakthrough occurs.  Writing is not a solitary act.  Whether one uses a scribe or puts pen to paper, forging the written word is an act of community, which invites the readers to become active participants in an ongoing dialogue in which there can never be a final or absolute conclusion. 

(Fun Trivia: The first three adventures of Dave’s Cerebellum were written with my two index fingers, which explains both the initial appearance of several egregious typos and the significant delay in new uploads.  The remaining three were typed by the most stalwart of my “employees”.)



            The special education classroom never made much sense to me.  The students in the classroom seemed to be grouped together haphazardly.  It did not matter if we had a physical disability (like my cerebral palsy), or a learning disability, or a behavioral disability, we were all forced to share the same space and perform the same activity because of some perceived general commonality.  We were all the same in the eyes of the state, somehow.  Worse still, each day was graded according to the equally abstract concepts of happy, sad, ok, or needs improvement.  Naturally, on the day that I lost the battle with the scissors, I was issued a “sad” grade for the day.  I didn’t know what this meant exactly (I still don’t) but it felt as though I had failed in some way that went beyond my ability to cut a damned circle out of a piece of paper.  I was worried that if I couldn’t cut this circle out, that I would be stuck in that room, cutting that circle until I got it right, while the rest of my daytime class continued on learning more shapes and letters without me.  I always felt out of place in the afternoon classroom and preferred to learn in the other class.  There, I had a better sense of exactly what I was learning and I felt like I was part of something.  The special education class never had the same sense of unity or progression.  We were simply performing tasks because we were told to and stopping whenever someone had an occasional outburst.  There were three adults in that afternoon class and I felt their eyes watching all of us, waiting to strike the moment trouble occurred.  I never felt particularly bad about crying but I was afraid of how those three pairs of eyes would react when I did.  I wonder now if this fear of an omnipresent evaluation also hindered me from performing those tasks to the best of my abilities, thus perpetuating and solidifying the terror of being stranded in that room.  Thankfully, my time in the afternoon class didn’t last very long because after kindergarten physical therapy was offered immediately after school, which now lasted a full day.  Based on my performance in the standard class, I was able to integrate into a full classroom schedule in succeeding years.

            Each year, I was subjected to additional psychological and learning tests to ensure that I was absorbing material in the standard educational curriculum, and every year until the end of high school, I felt the same terror that I experienced when I was asked to cut that circle.  “This is the year,” I recall thinking, “The jig is finally up.”  I would be sent back to that classroom, away from the friends I’d made and away from an existence that allowed me to be in charge of my own destiny.  On reflection, I don’t hold the teachers in the afternoon class responsible for these terrors, nor do I hold the psychological or intellectual evaluators in any sort of contempt.  I do, however, remain angry at a system that treats individuals with disabilities indiscriminately and seems to require us to constantly prove our “right” to autonomy.

            My placement in that class was based purely on my physical disability, which had no bearing on my intellectual aptitude.  Still, I was required to be there in order to receive the physical therapy that I needed to treat the manifest symptoms and effects of my cerebral palsy.  That treatment would not have interfered with the day class schedule, so the requirement to attend the special education class was also not based on time conflicts.  I am not indicting special education classes, because they are useful for people who need them, but nothing about my disability suggested that I needed it.  Neither do I believe that the individuals that do need remedial or specialized education are intrinsically inferior to me, or that they should be excluded from the normalized social experience of education.  Those tests and evaluations that I took in succeeding years seemed to be a direct effect of the limited time I spent in that classroom, time which was wasted and unnecessary.  Since I was completing the standard curriculum requirements on time and concurrently, my educators should have seen that I did not need additional evaluation. 

            This system was reprehensible and I have encountered similar institutional policies which seem to treat individuals with disabilities as a homogenous bloc of humanity, instead of as nuanced individuals with specific capabilities and capacities.  Many vocational agencies that I have encountered seem to engage in this behavior, ignoring the reality of my physical disability, which excludes me from performing manual labor.  There does not yet seem to be a way for these agencies to capitalize on the intellectual capacity I offer, insofar as the nature of my physical disability also excludes me from performing jobs of a secretarial nature.  I have the intellectual capacity to perform these jobs, but lack the physical capabilities to accomplish them in a timely fashion.  I do not believe that there is a willful negligence or incompetence present in this process, but rather that institutional policies have not evolved sufficiently enough to allow me to tailor a job search to my abilities.  Consequently, I have made the decision to continue my education in the hopes that going beyond my current bachelor’s degree will open up more employment opportunities.  Still, I am nervous about encountering the problematic mechanics of job performance, even after I obtain a higher degree of education.

             All these concerns are anchored in the tangible reality that to live, I require the means to be able to hire healthcare assistants and afford medications and therapies.  This reality already puts my cost of living at a higher threshold than what could be sustained at a normal pay grade.  Further, because I cannot find steady, reliable employment through vocational agencies (which are unable to address my specific needs) and my own searching, I must rely on government assistance.  Government programs and assistance do exist, but can become tricky to implement effectively, safely, and in a way that allows me to continue on a path towards financial independence.  In the current political climate, especially in the coming months with the new “super Congress”, these preexisting programs are themselves in danger of dramatic alteration or cessation.  (See my thoughts on this in my previous post)  I have no choice but to continue to try to progress and to document the concerns and problems with the policies that I encounter, in the hopes that in the course of an ongoing national dialogue, things can get better.

 Mirrors in bathrooms, classrooms, and mall dressing rooms were never at my height.  I saw flashes of my face, part of my forehead, the curve of my jaw line - never enough to leave a lasting impression.  Full length mirrors produced distorted reflections usually reserved for carnival fun houses.   The body that stared back at me was a knobby frame so minimally developed that it seemed as though the bone could have pierced through the skin any moment. The twists and turn of this body seemed to alter with every viewing.  Sometimes my body deflated and curved to the right, sometimes it leaned to left.   My limbs often morphed into incredibly awkward positions as a result of shifting weight distributions and muscle spasms.  Corrective braces painfully forced my body into positions that could only be maintained in short bursts with significant mechanical assistance. These devices created illusions of my body as it ought to look and encased my flesh in a plastic prison.

The Chair was the focal point of any reflection, picture, or representation of me.   Eyes, including my own, were inevitably drawn to the impressive machine that kept me mobile.   The Chair offered me vital stability, but consumed my body in a system of restrictive supports.   My feet floated aimlessly on platforms or were strapped down.  My chest and hips were supported by a series of guides that kept everything in proper alignment, but obscured those body parts from view.  I knew The Chair did not constitute my identity as a person, but I resented its omnipresence in my treasured memories, in the pictures I took with friends and loved ones, and especially in the fabric of my self image.

Paradoxically, I relished the opportunities facilitated by The Chair:  I attended classes, participated in musicals, visited friends, went to restaurants and bars (at least the accessible ones) and conquered college. .  Throughout high school and college, I spent nearly fourteen hours a day in The Chair attending to the various activities and responsibilities of a student.   The Chair enabled me to experience the world even as it restricted and concealed my body from that world.  People seemed to respond to The Chair; they complimented me on the look and function of function of the machine as I guided it through obstacles and traffic.  All of the comments about my “hot rod” or “sweet ride” cemented the idea that The Chair was an essential part of this person called “Dave.”

 When I graduated from college a few years ago, I had had enough.  The aging process and lack of physical exercise had deteriorated my functional abilities.  I could no longer use a walker or canes with any sort of proficiency, and even the slightest amount of pivoting or weight bearing was problematic.  So, I restarted physical therapy, determined to reengage those parts of my body that had been coerced into dormancy.   I knew I would never be free of The Chair, but the body inside of it needed could no longer be ignored.

Before any sort of routine could be assembled, I needed significant improvements in range of motion and  tone reduction in a few of my major muscle groups.   My hamstrings had shortened and tightened, preventing significant knee extension.   I could not actively straighten my legs well enough to facilitate meaningful independent weight bearing.   My adductor and hip flexors had become so spastic that I crossed my legs and in a scissoring motion every time I tried to take a step in a walker.   My legs crushed any device or hand that attempted to separate them.  My trunk muscles had all but withered away thanks to my dependence on lateral chest guides in my wheelchair and back braces meant to hold me in the optimum posture.

No amount of therapy or effort can completely reverse these breakdowns.   Once a certain amount of functionality is lost, those muscles become fixed and frozen within a limited range.   My treatment is focused on preventing these scenarios as much as possible and working within the threshold of my ability to achieve independent motion.  Therapy engages my entire body and reminds me that I have a physical reality that does not involve wheelchairs, braces or any other gadgets.  

I am determined to document this renaissance, to share my narrative with anyone interested in reading it, to confront the specters of the past and to grapple with the indefinite future.   Recording my recollections is important, but pictures allow me to transcend the limits of firsthand experience and witness my body at work.

I took this picture to capture my attempt to sit without any supportive devices.  I raised my arms off of the chair to force my back and trunk muscles to engage and resist the instinctive temptation to put my body weight on my arms.  The muscle tone in my lower body creates an automatic reflex which causes my muscles to move in a particular way, often producing the exact opposite of the movement I am trying to achieve.  In order to move left, I have to fight the inclination to move right.   Significant amounts of concentration are required to enact any movement so I remain a gaunt man.   I have not sustained a weight gain, in fat or muscle, since I was twelve years old.   As long as my nerves continue to misfire and compound my muscle tone, my body will continue to consume itself even as I strive to expand the threshold of my abilities.

 This is the curvature in my spine, my scoliosis   I cannot overcome this curve to straighten myself, so I usually wear a Thoracolumbosacral orthosis to correct this curve and keep me upright. However, using this brace has caused all of the muscles normally involved in keeping me upright to atrophy. . Consequently, I do not wear the brace all the time, and use physical therapy as a means to exercise those neglected muscles.

Therapy begins with the quadruped position, my version of a push-up: .It forces me to bear the weight of my body on my arms and knees while also elongating my trunk muscles and hip flexors.  These muscle groups are all involved in maintaining balance.  Typically I perform this exercise in sets of three for as long as I can hold it.   Quadruped is not painful, but it is exhausting.   While I'm holding this position, I instinctively hold my breath.   Eventually, I feel acid build up in my muscles and I hit the mat.  I try to make a concerted effort to force myself to breathe, but whenever I do, I invariably lose my grip.  In a certain sense, physical therapy is a process of learning how to do things correctly.   My form of cerebral palsy produces significant gaps in motor planning, which makes it important for me to perform these exercises to understand the basic elements of motion and muscle operation

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Next, I push myself up into the sitting position pictured above.  The biggest challenge is swinging my feet over the edge of the mat and planting them on the ground.   From there, I use my arms to push myself up on my left side. It bothers me that my right side is not strong enough to complete this side-sit maneuver, but at a certain point, the desire to complete the task and sit up overwhelms even my ideals.   Once I am sitting up, I can remain in the above pose for several minutes, unless some noise causes my startle reflex to engage and I lose all sense of balance.  Sitting is pleasant, but is only the prelude to the difficult centerpiece of my routine: standing

Standing in the EZ Stander accomplishes a few goals.   First, it allows me to bear a significant amount of weight to my legs, which aides in the treatment of my lower- body osteoporosis.  The knee pads on the stander straighten and extend my knees as far as they can tolerate..  Occasionally  I reach up and hang things on a pegboard to practice extending my upper body while my lower body is properly aligned.   I can stand for approximately   fifteen minutes before the pain becomes overwhelming.  As active and invigorating as this regimen is, it still feels insufficient.  Gains in range of motion are measured in degrees on a protractor, which do not translate into functional ability.

To hasten progress and unlock new potential, the tightest groups of my muscles were injected with botox.  650 milliliters of botox were dispersed through series of injections to my   hamstrings, quads, hip flexors, and groin muscles.  The botox weakens the footpads, the nerve sites at the base of my muscle tissue that carry spastic impulses and consequently gives me greater control over my muscles.

When I returned to physical therapy a few days after the procedure, I took a few heavily assisted steps in a walker for the first time since childhood. I was able to direct my legs to move my legs individually and overcome the muscle tone which had forced them to move jointly.

The adductor tone in my right leg remained problematic. When I lifted my foot my right foot attempted to step forward, my right foot curved backward. My therapist had to help me kick my right foot forward while another therapist stabilized my trunk from rear.  My trunk muscles and upper body were simultaneously working to try and keep me standing upright. Coordinating these activities gave me a new appreciation for the wonder of motion, the mysterious sequence of interlocking parts and process through which humans move. 

My excitement was restrained, by knowledge that the effects of the botox will be temporary. Eventually my muscles tissue will be subject to the usual amounts of spasticity and tone, but the exact timetable remains unknown. The common estimate is that the effects will last four to six months before complete reversion takes places. In the meantime, I began rounds of serial casting to stretch my legs older long periods of time so new responsive muscle tissue will grow and replace the older, unresponsive, spastic tissue

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These fiberglass casts extend from the top of my thigh to the top of ankle and are worn for four day increments.  Elevating my legs in the manner pictured above is essential to maximizing the stretch. It is a slight stretch, well within the limits of my tolerance, but as the hours and days compound, I can feel the pushback of my muscles yield to the stretch.  My knees are under a fair amount of corrective straightening force so some soreness is inevitable. Overwhelming soreness however, could indicate a skin breakdown .which could quickly develop in to a dangerous, infection. Consequently, I must be aware of my pain level at all times.

The biggest difficulty created by the casts is the challenge of balancing on the toilet. My legs are extended outwards which causes me to become pinned back against the back of the toilet. It is difficult to lean forward forward using my weak core and trunk muscles, though the grab bar in my bathroom does give me leverage and stability. It is not a comfortable situation and I use my portable urinal whenever possible.

My second (and hopefully final) round of casts began yesterday. While it is unlikely, that this round of casts (or any successive round of casts will produce the level of improvement, I experienced in the first round of casting, there is still potential for continued improvement.    Regardless of the results, I am eager tor return to physical therapy and test the limits of my regained abilities, however temporary those gains might be.

Exploring the details of this past year of therapy has forced me to examine and evaluate my body closely.  Understanding the strange, mechanics of my body does not nullify the shock I experience when I gaze upon this frame.   My ribcage forms a twisted textural relief on otherwise bland chest. My arms flounder haplessly about.   My legs simply exist; contracted and compressed into   positions occupied for decades.    Hating my body is an absurd reaction to a permanent visual reality and surrender to some idealized, standard of beauty that no person can ever match, but I do hate the limitations of my body, and the stagnancy of my appearance.

Integrity demands that I be forthcoming about my frustrations and resist the temptation to simplify complex reactions into simple affirmative platitudes.  Sharing my personal narrative, my pictures, my recollection connects me with readerss  and is is a victory in itself.  I can place my current challanges  within the framework of past experiences as I work to secure an independent future.

The communal potency of bodily contact suggests that the vessels humans inhabit are inexorably linked to the intellect, the consciousness, the soul. While the metaphysical self is distinct from its vessel, bodies should not be, and cannot be, dismissed as appetitive, inconsequential shells. Bodies are the instruments through which individuals connect with each other and comprehend the universe. Law and social custom recognize this intimate connection: Physical assault is not treated as simply a dispassionate, indiscriminate act of violence committed against a heap of flesh, but as an attack on the person, who exists inside that body. A traumatic assault can dramatically alter one’s attitude towards bodily contact, and produce adverse reactions to future physical interactions.

 Other people may simply choose to abstain from contact. These reservations do not indicate a rejection for of the need for connection and community, but rather that contact should be made after due consideration is given to the preferences each of each participant.  Indeed unwanted physical contact is a fundamental violation of personhood. Conversely, affirmative human touch resonates with the extrasensory desire for communion.

Meaningful consensual touch obliterates, however briefly, the intrinsic separation imposed by the cosmology of individual minds and bodies. These physical unions constitute a movement from singularity to a shared plurality; joined extremities remain anchored to their respective bodily frames, but the new relation between bodily members is a coexistent reality. Consider the example of holding hands. Dave does not hold Tallulah’s hand, nor does Tallulah hold Dave’s hand: Tallulah and Dave hold each other’s hands. Neither party lays an exclusive claim to consensual bodily contact, yet both participants are revitalized. Affirmative human contact quiets the deafening roar of metaphysical inquiries, of existential anguish, and asserts the courage of being.

Socialization engenders the conditions under which such physical contact is acceptable. This is a continual process, the seeds of which can be found in the earliest stages of development. Infants crave touch and to touch other people. Peer groups, family members, and environments quickly begin to teach newborns which individuals are touched, how they are to be touched, and who is allowed to touch them. This process continues through childhood, takes on a specific vigor when sexuality develops, and continues to evolve throughout every stage of adulthood. The development of a discerning attitude regarding the many different variations of bodily relation is a good and essential process. Nurturing a sense of exclusivity concerning certain modes of contact ensures that physicality retains a nuanced specificity that faithfully conveys proper emotional meanings. Good friends have a secret handshake; Parents have a special way of holding each one of their children; Lovers have sex in their own particular fashion that transcends hedonism to bind them together in a lasting union.

A progressive attitude toward bodily relations requires constant redefinition as experience expands and sharpens understanding. When persons with radically different bodies and methodologies of physical interaction encounter one another, each person must choose to either modify his or her understanding to include these new discoveries, or distinguish individuality by rejecting those differences. This is an ongoing process, recast and remolded by challenging experiences; rejection of certain bodies and interactive mechanics in the present does not establish a fixed precedent for future behavior. Nonetheless, the connective power instilled by socialization also contains an implicit principle of separation which identifies those persons who are to be excluded from normative contact. This restrictive undercurrent within socialization is especially relevant to people with disabilities: The mechanical limitations of our bodies can make it difficult for us to engage in and receive the ritual of truly sustaining human touch.

My form of cerebral palsy necessitates all manner of assistive physical contact. Other people touch, lift, hoist, and interact with my body because they must do so to keep me operational and alive. Showering, dressing, transferring to and from wheelchairs, toilets, and beds all require assistance from another person’s hands. At physical therapy, I am poked, prodded, stretched, massaged, and exercised to the limit of my pain threshold. I perform a circus of routines so that I may, one day, master independent movement. Actual achievement is rare, but I relish the rebellious satisfaction of waging a battle I am destined to lose. This primal fight forces me to channel and demonstrate my prowess, which is otherwise unnoticed or ignored.

Lack of inclusion in the physical activities of humanity is a consequence of socialization. Strapped to and tightly secured in a chair that keeps me waist level of most bipeds, the immediate assumption is that I cannot engage in any sort of bodily interaction. In order to minimize the apparently self-evident conclusion that I cannot participate in such contact, other people generally do not offer me reflexively inclusive physical greetings. Few handshakes are extended to me, few kisses of greeting graze my cheek, few hugs are offered. I understand the desire to respect my personal dignity should I be unable to physically reciprocate, but the absence of attempts is frustrating.

Even if I were more functionally limited, unable to reciprocate or feel the action, receiving the inclusive intent of such an action, especially if phrased in the form of a question seeking consent for even the smallest manifestation of social bodily contact, would be incredibly meaningful. If an offer is made, whether through a traditional physical cue that requires my participation to complete the act (like an extending handshake) or through a prefatory remark seeking permission to initiate contact (“May I shake your hand?”), the spirit of inclusion is still present. Either of these scenarios is certainly preferable to a tacit exclusion based solely on concerns of dignity or presumptions about my physical or mental fragility based on my physical appearance. I am also keenly aware that not all persons engage in physical contact as a conduit of expressing social grace, or even as means of expressing affection. My point is simply this: No person should ever be isolated from bodily contact simply because his or her physical appearance suggests that he or she might not be able to do so because his or her body type and functional ability exists outside the normative realm.

One of the most enduring and universal struggles of individuality is accepting the very possibility of personal attractiveness or sex appeal. No person or group is immune from paralyzing anxiety about the nature and quality of certain physical attributes. Every person wishes that his or her actual appearance exactly matched whatever idealized self-image dwells in the deepest recesses of his or her consciousness. Actualization of these fantasies will never happen, but there is a perpetual desire for that kind of hair, those kinds of abs, or those curves. I find my own body repugnant, a haphazard mishmash of skin and bone jutting out at harsh angles, with no discernable muscle definition. In my weakest moments, I wish I had the toned, lithe frame of a dancer or a boxer, a distinguished jaw line, chiseled cheekbones and jet-black or fiery red hair. These desires are rooted, at least partially, in arbitrary socialized standards of beauty, which are pervasive and powerful in every culture. As such, these desires may never be mitigated. However, most of my bodily envy is rooted not in a desire for the specific accidental qualities of attractiveness, but in a desire for a functional, precise frame.

The presumption of functional limitations is a recurrent problem to my dating life. My bony wisp of a frame, encased as it is in a wheeled cage of metal and plastic, does not awaken visceral passionate desire in any potential able-bodied romantic partners, nor does it inspire confidence in my own physical abilities. People automatically, and incorrectly, assume I am impotent, that I have insufficient mental capabilities for a relationship, and that I am emotionally immature. Some degree of natural curiosity is inevitable, but confessions from a few past girlfriends detailing the extent to which my chair and my body initially made them skeptical to enter into any sort of relationship with me, convinced me that this is symptomatic of a larger cultural misunderstanding. I am capable of fully and satisfactorily integrating into a relationship, physically, mentally, and emotionally. Some of the particulars simply require a willingness to do things a little differently, but I have a reservoir of creativity that curves around any physical limitation. Of course, I am limited by certain mobility concerns, so the notion of a sudden unplanned romantic dalliance is largely hindered by a concern for a physically accessible meeting place, with grab bars and handles; the conventional spontaneity of courtship is largely absent from my experience. Additionally, the shared solitude in which couples so rightly revel can be difficult for me to facilitate.

The most moving and calming instances of touch and contact often occur in shared private moments of companionship. Unfortunately, in a life filled with personal aids and the need for assistance with elemental tasks, these moments can be elusive. Plans need to be made far in advance to secure the help that does not invasively spoil the desired mood. In the struggle to attain some sense of value as a viable autonomous individual, it is important for the intricacies and implementation of any assistance to be as focused and seamless as possible. Things like assistive trips to the bathroom, chauffeuring, and transfers to beds should be done with the utmost efficiency and discretion. The problem here is that hired help with this level of professionalism and ubiquitous invisibility is extremely hard to find. It is a matter of sacred trust to involve an additional party into a realm that is so deeply personal, so preciously vulnerable. The communal aspects of certain parts of my care also require that my significant others develop a tolerance and understanding of the people who care for me. Interactions between me, my romantic partner, and my support staff require cordiality: Professionalism should be maintained at all times, but it is important to me that my romantic companions treat my staff as persons, not as ancillary extensions of my care.

 As a personal preference, I do not allow girlfriends to be involved in the daily manifestations of my care, even if they are ready, willing and able to do so. The conflation of caretaker and companion changes the tenor of a relationship, flavoring the whole experience with feelings of indebtedness, entitlement, and dependency – obstacles to mutual coexistence. Many of my friends who have disabilities happily receive such care from their girlfriends, boyfriends, husbands or wives, and it works splendidly for them. It has never worked out for me, and I remain wary and unwilling to cross that boundary, except in cases of absolute emergency. As with all things involving human relationships, there is no universally accepted method or principle.

Arranging one-on-one time with a romantic interest who also has a disability can be equally frustrating. Thankfully, much less time needs to be spent detailing functional restrictions. There is already an implicit understanding about these matters to remain focused on interpersonal dynamics and relatedness. However, there are more schedules with which to contend since there might be more than one set of aid availability to consider, more than one set of transportation logistics, work and school schedules. Most disturbingly, support staff, friends, and family might get emotionally invested in the idea of a budding relationship. Spurred on by sentiments of “Look how cute they are together, like a boyfriend and girlfriend,” the very idea of a romance, of a relationship, becomes a charming novelty. The subtext of this revolting behavior is clear: People with disabilities are not capable of emotional codependence, of experiencing the desire for bodily contact and intimacy, but are simply imitating behavior and playacting. These situations and these people draw the full magnitude of my ire. All people should be afforded the dignity to explore the possibilities of relationships that are grounded in awareness, mutual respect, and understanding, without any coercive influences, and certainly not for the entertainment of others.

Bodily restrictions and social difficulties of this nature, while aggravating, do not define my experience. My body is a malfunctioning, decomposing and imprecise instrument, but it is the instrument through which and with which I must work. And I do. I love the powerful connection established during a hug. Two bodies joined together, as physical barriers collapse and a plurality is formed. Few things in the world eclipse the experience of holding another person and being held by that person. Hugs are selective activities, but once I form a particular kind of friendship with a person, hugging occurs often. This is not without a certain sense of awkwardness: Sitting in a wheelchair grounds me at a lower point than even the most moderately sized standing individuals. As often as possible, I will wait until they are sitting down to hug people so we are at eye level and they do not have to swoop downward to grab on to me. I believe so strongly in the principle of hugging friends that if I discover that two of my friends are gathered in one place, I request that they hug each other for me. This can never replace first-hand participation, but it is a way of making my presence known. The daunting logistics and cost of assistive travel continually thwart carefully made plans to actually visit friends from distant coasts and faraway lands.

During those instances when my body fails me and the circumstances of my existence keep me trapped in a geographical deadlock, my words can reach out across the ether and connect me with others. Blog posts, emails, phone calls, and social networking can keep me involved in a world that would have left me behind long ago if biological determinism had its way. I am constantly connecting with the people who are closest to me, sending them emails, text messages, and packages to strengthen our connection. Those who believe that the connectivity of the Internet and mobile communication technology corrode interaction, warp relationships, and promote narcissism miss the point entirely: These devices provide me the means to maintain unique relationships with individuals who are outside of my reach and proximity. This can never replace the sheer joy of actual face-to-face interactions and contact, but some sense of togetherness is nurtured. Abject loneliness is muted.

Personal understandings of identity and physical contact continually evolve. Changes in perspective, physical ability and emotional temperament cause us to revaluate who we are, how we to interact with others, and the roles our bodies play in our relationships. These life changes may force us to discard certain modes of physical interaction we are no longer capable of perfuming, or which no longer convey emotional impact, in favor of new modes of expression. I believe that that the mysterious relationship between the mind and the body produces a self who acts through and with the body for the totality of present existence. Sincere consensual touch invigorates all participants, manifests the bond between loved ones, and should be cherished.

My wacky cerebellum falls into that category.  At birth I was diagnosed with spastic diplegia, a form of cerebral palsy characterized by a  high degree of spasticity and lack of coordination in the lower limbs.  I was born a fraternal triplet, three months premature, and my brain did not receive the proper amount of oxygen needed for standard development.  That theory is the most plausible explanation for my condition, though it cannot be proven conclusively.

My diagnosis is itself a bit vague.  Cerebral palsy has infinite manifestations : no two cases are exactly alike.  Some folks with spastic diaplegia are able to walk, still others have speech and cognitive difficulties.   It can be diagnosed at birth or occur after a traumatic  brain injury or a stroke.   I've never been able to walk with any fluidity or consistency,  but I can talk, (though sometimes my speech is ever-so-slightly slurred).  I have nearly full range of  motion in my upper extremities, though  I lack fine motor skills and heavily favor using my left hand in daily activities. I have a slight cognitive limitation related to my depth perception, but otherwise my higher level functions remain intact.  Age has increased my muscle tone, decreased my muscle control, and caused me to develop a host of cosmically humorous and frustrating secondary symptoms that I did not expect.

I have developed severe osteoporosis. I have arthritis in every major joint in my body. My hamstrings have tightened to such a degree they have pulled my spine out of its proper alignment. Years of poor posture have left me with scoliosis.  Sitting in a wheelchair for most of my waking hours has left me with the squarest rear end imaginable and has had funky effects on my circulation. In my favorite bit of medical voodoo, my out-of-the-socket hips literally touch the bottom of my ribcage.  Doctor always cheerfully explain the sterling logic behind each new development and I am left wondering what new (but fully explainable, of course) surprise awaits me.

It occurred to me somewhat recently that I have my lived my life in spite of my disability, or perhaps in denial of its reality. Since I did not want to miss out on valuable classes or social time with my peers, physical and occupational therapy was an activity that only happened between classes in high school and college . I had approached my disability abstractly, relishing in its  mechanical minutia and the philosophical and socipolitical consequences of the ongoing Disability Rights Movement,  but I had yet to confront it personally. Instead, I completed my Bachelor's Degree in English and Philosophy and spent several months floundering aimlessly in the corpse of a job market that awaits all humanities majors. A fair number of my (able bodied) close friends from high school and college were moving away, getting married, starting careers, going to grad school and attaining the seductive Autonomy of Adulthood. 

Meanwhile I was stuck at home with my parents, floating from odd-job to odd-job, wondering how the hell I had become paralyzed in the abyss of stagnation. My parents have supported me in every way, and made sure that they tended to every detail of my physical care so that I could get an education and have as fully realized of a social life as possible. But I was concerned that we were all becoming dangerously complacent. They cannot care for me forever: Lifting me and helping me dress, toilet and shower will eventually become a logistical impossibility. Even if the current arrangement were sustainable for the foreseeable future, I realized that I needed a change.  Having a parent see to all aspects of care for an adult child can be incredibly infantilizing.

 There are times when I have to remind my parents not to do everything for me, but they are so accustomed to doing everything (or are afraid of the consequences if I fail to do something on my own) that it has become an automatic reflex for them to do everything for me. This includes the little things, cutting up my food, pouring me a drank, grabbing me a book or DVD from a shelf, and picking up dropped items. The intention is understandable, but the execution can be oppressively annoying. My frustration with those unalterable daily living tasks with which I do need significant assistance is even more profound. Frankly, it is inherently emasculating to have your mother or father wipe your ass and assist you with showering everyday.  Try to imagine yourself as a sexy, vital individual, under those those circumstances. It is not easy.

Since my job prospects were (and remain) non-existent, I decided to enroll in a vigorous physical therapy program.  I was determined to stop the cycle of passive decomposition and turn it into some sort of active progress. Eight weeks laterI i hit The Wall. It became apparent that without some sort of medical intervention, I would not be able to reduce my muscle tone and increase my muscle control sufficiently to  perform the types of transfers and activities I need to become more independent.

My therapist suggested I get evaluated for a basic botox procedure in which botox would be injected into most tense areas of my muscle core, (e.g. my aductorcts and hamstrings) to reduce the tone and give me more flexibility and control. My time in therapy suggests that I have the muscle strength to stand, pivot, and transfer (maybe even take a half-step or two) if my tone were reduced. Maybe.

The evaluation for the procedure went as well as I could have reasonably expected. The specialist who will perform the procedure warned me that my contractures and arthritis might be operatively limiting movement as much as the muscle tone; he expects any improvement to moderate at best. Additionally, I will undergo 5-7 weeks of serial casting after the procedure to keep my legs at the highest point of tolerable flexibly and retain the greatest possible effect of the procedure. Five weeks of full leg casts for a procedure that may not even work is a pretty significant investment of time, but it's a gamble I'm willing to take. Failure does not scare me and complacency is a luxurious sin I can no longer afford.

The procedure will  happen in about happen in about a montth.  I figured launching this website could be a useful way to for me to force myself to be constructive and active during my recovery.  This space won't be an active accounting of that recovery. I intend it too be a place for all kinds of adventures. You will be privy to the books, films, music, television shows, current events, and people who captivate me. I'll be digesting a lot of stuff as I grease the wheels for my hopeful entrance into grad school in the fall. I'll share the things which interest me here.  I suspect at least some of the material will be geared towards ruminations on life with a significant physical disability, but not all of it will be.

The name of the blog  is "Dave's Cerebellum" because I wanted a sly way to reference That Thing which informs (but does not define) my existence, It is also source of endless amusement to me that word "cerebellum," translated from Latin into English, means "little brain".  Depending on the context, that can either be a clever description of the function of a certain lobe of the brain  or an ironic pejorative. Since my intellectual reach often exceeds the precision of my grasp, I think the "little brain" subtitle is particularly apt. It will remind me to keep my massive ego in check and to weigh my words carefully.