Sharing the text of Dan's talk about being Eli's dad . . . delivered today
at the Kimball Union Academy.
My son
Eli is disabled.
We are
not sure what causes Eli’s
cognitive
and physical disabilities. Every
couple
of years new genetic tests are
developed;
and every couple of years
we take
Eli to the geneticist, draw some
blood,
and wait for the results. No
answers.
Parents
of children with disabilities don’t
always
know at birth that their kids have
issues.
Everything may appear, at first,
well,
normal. And then you start to
notice
that your child is missing a few
key
developmental markers: crawling,
language,
etc. Mica, Eli’s mom, and I
began
to notice just such issues with Eli
sometime
prior to his first birthday.
Like
all stories, Eli’s is both captivating
and
mundane: For Eli, tests and more
tests;
years of physical therapy and
occupational
therapy and speech
therapy
and swim therapy and horseriding
therapy.
For his
parents, the budding realization,
day
upon day, that
their
child is going to be different.
Sometimes,
when I consider Eli and his
disabilities,
the grief comes hot, like a
firecracker
pop in the back of my throat.
When,
in his unique language, Eli tells
me that
he has no friends, that during
recess
he plays alone on the slide, my
heart
drops out of my body.
At
other times, when I think about how
Eli
lives in the moment; how he experiences
the deepest,
purest joy in the simplest of
things,
I feel very much at peace.
I used
to believe that uncovering the
root
cause of Eli’s issues would give me
the
answers that I needed; not a cure
mind
you, but at least knowing would set
us, would
set me, on the right path; that
knowing what Eli had, or was missing,
would
inform me as to how to BE Eli’s
father.
A
decade on, and I see things
differently.
The beliefs that I have held
about
who I am supposed to be,
and
how I
am supposed to act –
as the
father
of a disabled child, as a person -
have
changed.
Pema
Chodron tells us, “We think that
the
point is to pass the test or to
overcome
the problem, but the truth is
that
things don't really get solved. They
come
together and they fall apart.”
As Eli’s
dad, what at first looked like a
test -
a test of my character and of my
strength
and righteousness - no longer
does.
What I have come to see is that
there
is no test to pass here.
I think
that often the able-bodied view
disability
through a mythic lens, where
the
disabled and their advocates are the
heroes
in some monumental battle
against
the apparently uncaring and
harsh
UN-disabled world.
I embraced this story. When Eli was
very
little, I penned, in my mind, a
fantastic
tale of Eli and his father,
together,
fighting the good fight;
overcoming
the myriad land mines that
lay in
our path.
What I
have come see is that this
construction
of Eli, and of our
relationship,
was really just a wall; it was
a wall
that I built so that I could keep
reality
at arms length. It was a wall that I
constructed
to protect myself from the
fact
that life can be heart breaking, that
parenthood
and suffering often go hand
in
hand; that things sometimes do fall
apart.
We, I, don’t always do grief so well. We
run
from it. We stare reality in the face,
and
reality stares back; reality never
blinks.
And so we turn away. We live
outside
of ourselves in an effort to
escape
the heartaches that are simply
part of
the trip.
When
Eli was little, I used the vision of
the
epic struggle to shield myself from
my own
sorrow, my own heartache. But
when my
guard was down, Eli reflected
back a
truth that I didn’t like; a truth
about
my own childhood; a childhood
replete
with uncertainty and fear and
vulnerability
– The death of a sister, the
despair
and remoteness of my own
parents,
a lefty in a righty’s world.
I think
that we, the self-identified ablebodied,
look at
people like Eli, at people
with
disabilities, and we see something,
someone,
who appears broken. We see
someone
who isn’t whole; and deep
down we
thank whatever god we believe
in that
we aren’t…them.
And
yet, aren’t we all in some ways
broken,
not whole? Don’t we all suffer
our own
loneliness, or confusion, or
moments
of despair? Isn’t that perhaps
what
unites us all; that none of us is
completely
whole?
In a
recent interview with NPR about her
forthcoming
autobiography, Supreme
Court
Justice Sotomayor tells us about
her
trying childhood. An alcoholic father,
a
mother’s depression. In her honest
account
of her own life, Justice
Sotomayor
reminds us that life is, at
times,
a struggle. That this is a truth we
all
share.
I am, I
have been, fiercely protective,
overly
protective, of Eli; he is completely
vulnerable.
Eli comes to the world totally
open; he
lacks the capacity for cynicism
or
wariness; he cannot – literally,
neurologically
-- shield himself from the
cruelty
or apathy of his fellows.
A
deeper investigation reveals however
my
over-protectiveness as an
unconscious
effort to protect me from
watching
Eli suffer. If I can only shield
Eli
from being sad, then perhaps I will
be
saved the agony of watching him
helplessly,
without a compass,
navigating
the life’s most treacherous
waters.
No one protected me, after all.
And so
maybe in Eli I have perceived a
chance
for some kind of redemption;
maybe,
a chance to heal my own
wounds
by sheltering him – me - from
the
heartache that is, at times, just part
of
life.
When I
step back from it all – when I
reflect
as honestly as I can upon all of
the
ways in which I have used Eli to
guard
myself from my own sorrows and
struggles
– I move closer to engaging
life
from a place of acceptance, and joy.
I am
also able to be Eli’s dad for the
shear
wonder of it.
In the
end, Eli is neither symbol nor
metaphor;
He is not a cause for me to
champion.
Eli is not some unique
moment
in time, an object, whose
physical
presence I am meant to use to
call
forth my own courage. Eli is simply
my
lovely son.
And
lovely he is.
Eli’s
mother and I chose his name with
great
care. Eli for Duke Ellington, a man
whose
music changed the world; And
Eli’s
middle name, Kuruna…a Buddhist
word
meaning compassion for others,
empathy.
Eli is compassion. He loves without
condition.
He teaches everyone who
knows
him about love, and about
presence;
about vulnerability and truth.
And so
for me an underlying truth
continues
to emerge.
What I
see more clearly every day is
that
all of my perceptions and
projections
about how I thought I was
supposed to act and react to my
son,
and to
the world, clouded my vision as
to the
reality of my son, and to my own
humanity.
– That he is lovely just the
way he
is; that he complete and whole.
And
that even in our own brokenness,
our own
struggles, we are all complete
and whole.
And so,
more and more, I am able to
bask in
the OK-ness of it all…to, with
awareness
and gentleness, reject the
image
of who I once thought I was
supposed to be – the heroic father
of a
courageous
child - and to accept more
who I
am, and who I am not.
I am
not an activist for the rights of the
disabled.
I advocate for my son when I
have
to. From time to time I review
proposed
changes to federal and state
special
education law, and if need be to
voice
my approval or disapproval to the
appropriate
powers. But for the most
part I
advocate for Eli in pretty much the
same
way I do for Hannah, my ablebodied
daughter.
I am
not without discomfort. When I take
Eli to
Special Olympics bowling on
Sundays,
I feel uncomfortable.
Sometimes
I, the father of a disabled
child,
feel uncomfortable around people
with
disabilities.
And
here I am…a person, just like each
of you,
who is trying to live and honest
and
full life.
And
while I don’t know everything, I do
know
this: There really is no test to pass here.
Things
come together, and they fall
apart.
Eli has definitely taught
me this.
