I have to wonder sometimes at the
audacity with which we are judged by others. Of course it happens to us each
day and we are even guilty of it ourselves but nowhere can it be more alarming
then when we feel our children’s very lives judged because they are severely
disabled. As a parent providing round the clock care for my son for over fifteen
years there are many constants in what has become our tiny, nearly hermetic
life. Unfortunately judgment is one of them.
Often I have heard the question
phrased, ‘what is the point?’ when discussing the care of my son. ‘Isn’t he
suffering?’ is also asked, sometimes in tandem as though to drive home the point
that I really have no reason to be taking care of him all these years. “You
have no life”, is supposed to be the nail in the coffin, I suppose. Because it
seems incomprehensible to others, (perhaps they are well intentioned in their
concern for me) that a life of providing extreme care for your child could be even more worthy than it is difficult. That in this life experience there is
place for personal growth and the opportunity to find an indefinable
connectedness within the deepest levels of humility and indeed, to define our
humanity.
Each day my son has countless
seizures and suffers respiratory distress. Multiple sessions of respiratory
therapy are needed and he must be fed, toileted, massaged, repositioned and
given multiple medications throughout the day. Surgeries have left him scarred
and debilitated as his paralyzed body slowly collapses in on itself.
Not strangely, the difficulties
encountered as such have changed my outlook but sees me grieve for my
encounters with ignorance concerning those difficulties when people feel the
need to project negativity on our lives in an entirely thoughtless manner. From
physicians who have mustered, “you should think about having another child,
don’t bother with this one” to bioethicists who maintain that a sick child, if
also disabled, simply does not possess enough merit to live. The consequences
of the lives of such children is parlayed into a sense of having no ‘cause’.
For years I would try to convince
people, gently pointing out the ‘good’ moments as counter argument. His obvious
will to live; the need to care for someone who has no ability to do so
themselves. I would never invoke the
‘sanctity of life’ dictum, so frowned upon by many academics. I would not
mitigate my indignation with such statements since after all, we are mature
adults simply discussing matters dispassionately, aren’t we? Emotion being the
harbinger of mistakes; it creates an air of fallacy, so we must remain cordial
and exact and correct, yes?
In The Netherlands they have
already found solutions to this matter – without any public referendum, where
the bioethics of utilitarianism holds sway and the term, “unbearable suffering”
has become the commonplace catch-all phrase to justify encouraging parents to
authorize “assisted dying” of their newborn, disabled children.
But I understood over the years
of discussions and defending my worldview that their position is based on more
than one omission. One, being that we are human beings still caught in a
process of development and indeed, in need of development. As evolved and
evolving beings we can look to progress in regards some of our most lofty characteristics,
such as caring for one another and the acceptance and the acknowledgment of
true equality, as integral to such introspection. It seems that the ethics behind arguing
‘worth’ of a disabled and ill child has them categorize equality simply as
“sameness”.
I no longer make attempts to
defend my position to the ‘uninitiated’ though and my response is simple: “Try
it.” Raise such an extremely physically
and mentally compromised child and then, and only then, tell me what understanding
you have reached. You cannot simply make statements with such deep
ramifications if you lack even basic knowledge of the subject matter.
Lacking such opportunity or
inclination, do the next best thing in order to have an informed
opinion; speak to parents who are raising and have raised such children. Yes,
speak even to the parents who have lost their child. Speak especially to
them. Ask them about their experience
and I dare say you will not find someone who weighs in solely with
regret. Ask them if it was worth it.
Though many will be hard pressed to find exacting words with which to
phrase such, ask them if it has contributed something not merely tangible, but
essential to their lives.
I doubt many parents, when their
child is given a strange look at the park, or see someone walk by with forced
stare locked firmly to the ground, embark on a discourse of bioethics with the
perpetrators of “the look”. But an inner conversation will most certainly take
place, each time. Mostly those
individuals who give “the look”, are not in the least bit nefarious in their
outlook. I am more worried about policy
makers such bioethicists who sit on medical boards, like the ones in Great
Britain, Belgium and Holland, or someone such as Peter Singer in the United
States who cloak their severe bias in reasonable sounding arguments. As
Horace called it, ecipimur specie rectie (We are deceived by the semblance of what is right).
I think if ever you encounter such questions over
whose life is worthwhile we should be most wary if we are asked to rationalize
our reasons. Because perhaps then the next question will be, “given the choice,
would you do it again?” epitomizing the moral bankruptcy of such questions with
its oversimplification, from an uncontrollable urge to quantify human worth with
near mathematical precision. While those enthralled by the technological
information age wonder at the ability to express the human genome by a series
of ones and zeros in a computer, this does not imply the right to reduce our
very real experiences of love and caring in similar fashion.
Actually allowing the experience of caring night and
day for a disabled or otherwise compromised person to change us, is
quite an exceptional and worthy endeavor. Especially in light of the fact that
despite the appearance of constant change around us, our natural reaction is to
recoil from change. Change makes us uncertain and parents willing to partake of
such a life are the very definition of courageous pioneers.
I have seen the question, “given the chance, would you
do it again?” on forums and in comments to news reports concerning the
catastrophically disabled or ill. The question is brazenly touted as a trump
card to silence those who whimper and mumble, as I did, with pitiful defenses
of “value”.
Would I do it again, if given the choice? Allowing my
life to be turned upside down and inside out? To lose financial stability,
reasonable certainty in life, and comfort? To see aches and pains and chronic
fatigue turn to ailments. To see others continue their lives with social
connections, vacations, friends and knowing, knowing that I would once again
suffer the heartache of those moments when my son’s life seemed to slip away,
only to marvel and be filled with gratitude as he bounced back? And until when?
Would I share in those simple moments of connection, when life is reduced to
its most valuable elements, as has been felt by so many parents in similar
situations?
Yes. In a heartbeat, I would.
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