I have adventures. Physical, metaphysical, ethereal. Some might call them an odyssey. I call them my Twenties. I am glad you are here.

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    And a Little of that Human Touch

              The self is not some hyper-rational entity which can subdue, through an act of superhuman will and asceticism, the physicality and limitations of the flesh.  Neither can the self be treated as a quantifiable bundle of actions, reactions, or metabolic processes.  To explore questions of identity, careful attention must be given to the interrelatedness between these composite elements.  There is no simple or universally acceptable answer to this quandary.

              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 of the need for connection and community, but rather that contact should be made after due consideration is given to the preferences 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 who have 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 at 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 extending a 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 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/her physical appearance suggests that he/she might not be able to do so because his/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 halting anxiety about the nature and quality of certain physical attributes.  Every person wishes that his/her actual appearance exactly matched whatever idealized self-image dwells in the deepest recesses of his/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 functionally 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 elementary 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, which allows us 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 who have 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 subdued.

              Personal understandings of identity and physical contact continually evolve.  Changes in perspective, physical ability, and emotional temperament cause us to reevaluate 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 performing, or which no longer convey emotional impact, in favor of new modes of expression.  I believe 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.


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    • Response
      Body and mind are two different things but these are more likely to have same characteristics. For example if we use our brain too much our body starts feeling reaction in it that time and on the other hand if we take too much work from our body then it also ...

    Reader Comments (5)

    This is lovely. So eloquent, but passionate as well. And I think it's good to get information out there. I think a lot of problems come primarily from ignorance, coupled with an unwillingness to just... well... ask.

    When I first started dating my husband he told me he was as autistic very early on (PDD-NOS) and the first thing I did was research everything I could about it. Then the second thing I did was forget 75% of what I'd just learned because I realized everyone is different and the easiest way to learn was to just talk to him about it and get to know him and the way he thinks. Assumptions are a horrible way to interact with people.

    Also, I'd like very much to give you a hug!

    March 17, 2011 | Unregistered CommenterItsbecca

    Wow. This piece is so profound Dave. Thank you for sharing this. And I now regret not extending the offer of hugs to you more often.

    March 18, 2011 | Unregistered CommenterJessie

    spectacular dave, as usual.

    March 20, 2011 | Unregistered Commentercare

    Not hugging you, David?!? That is an impossibility.

    It has always been a secret dream of mine to be a dancer. Shocking, I know, from the amount of showtunes in my life. Then I turned out to be 5'6 and curvy. But I like to think that in a parallel universe you and I are fabulous dance partners. I'm imagining Fosse, perhaps Tharpe.

    This is brilliant as always.

    March 20, 2011 | Unregistered CommenterMegan

    I instinctively recoiled just reading the words, "I find my own body repugnant," but then I thought, "Actually, probably 70% of the people I know are secretly thinking the same thing. Especially as we creep out of the 18-35 age bracket."

    It's interesting, the roles Skype and Facebook and Twitter and IMs play for each of us. They are more of a conduit for you, while I'm more ambivalent about them. They connect us all together, yet do it in a rather isolating way. It's the paradox of our times.

    March 22, 2011 | Unregistered CommenterJimski

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