As a person with a severe physical disability, I need a lot
of help just to survive. My entire life is one of interdependence. There are
shoes to be tied, showers to be given, clothes to be put on and taken off. By
necessity, I must embrace togetherness even in intimate moments, a task that
requires tremendous peace with my body and tremendous awareness that as human
beings, we need each other. It can be beautiful, when another person learns the
slow, crooked rhythm of my body and falls in sync with the pieces of the world
as I see it. The way I like my hair brushed, the way my hands settle into a
fist when I’m thinking deeply. The way I laugh with my whole being. The way
excitement cannot hide itself because it courses through my muscles like an
electric current. Done right, this interdependent caregiving relationship is a
demonstration of everything for which a community should strive. But when the
responsibility is neglected, I am reminded how frustrating it can be to rely on
someone else just to go to the bathroom.
I am fortunate to have access to paid caregivers through
state-sponsored services. Yet the reality of my life is such that my needs
extend far beyond the 8-10 hours the powers that be call “medically necessary”.
The happenings of a life cannot be neatly contained in a bureaucratically-
bestowed time window. After those hours
are up, the beat goes on. I cannot possibly pay for every iota of help I require.
Think of every cup of juice you pour, every errand you run, every time you plug
in your phone, and envision how much it would cost if someone asked you to pay
every time you had a basic human need. With the lifetime cost of cerebral palsy
already estimated to be about 1 million dollars[i], things add up quickly.
This is not to make you pity me; I simply want to quantify how expensive just getting
by can be. When the expectation is constant money, by the time you pay someone
to bathe you, dress you, and toilet you, there’s no pocket change left to set
up your new TV, and you better hope someone cares enough to do you a favor.
This is not to argue either that paid caregiving has no place. Compensation for
care is very important. I merely want to demonstrate that sometimes, we
disabled people need someone to “do us a solid.”
Herein lies the problem with the term “special needs.” It is
just a way to neatly package the needs of the disabled as someone else’s
problem— “special,” and therefore, outside the realm of what human beings ought
to do for each other as neighbors in a world where everyone will need help at
some point. Non-disabled people do “good deeds” for each other regularly
because that’s what friends (and good people) are for. Sometimes, good deeds
take the form of rides, dinners made, or a couple of hours watching the kids. Yet
I have observed that payment or “credit” for helping disabled people has become
so engrained in our culture that we are frequently excluded from the receipt of
unpaid kindness. In other words, good deeds for us often have price tags. Too
many people feel that they deserve money, volunteer hours, or media attention
just for being with us. I want to be a friend, not a service project.
The sort of help I need may not be typical. It may be
something your six –year- old can do on his own. It may be a task that when you
consider what it would be like to need help with such a thing, you squirm. But
no, my needs are not special. They are so profoundly human that most people
take care of these needs without even thinking.
I want to reiterate that I am not implying that all
caregiving should be free. I am suggesting, as a human being, that people
without disabilities need to help us out sometimes for the sake of goodness,
just as they do for each other. That is true even when the task with which I
need assistance is not quite the same as baking brownies for the neighbor’s
dinner party. Worrying that someone will perceive you as “taking advantage”
every time you ask for help is heartbreaking. So is worrying that people will
decide it’s too much work to be your friend. The heartbreak is infinitely
multiplied when you know that if you had the physical ability, you’d help another
person lie down on a bed or take a bite of food without thinking for a minute
about money. Paid caregiving is important, but we cannot let it cloud our
ability to see the value of basic kindness.
In his work The Dismal Science: How Thinking Like
An Economist Undermines Community, Marglin writes, “In the twentieth
century, what neighbors once did for the incapacitated has become the job of
practical nurses, and is no longer an activity that binds the community
together—except where poverty puts professional nursing out of economic range.”[ii] While I reject the
characterization of disabled people as “incapacitated,” and I count nurses
among the most noble and necessary professionals, I often long for that bygone
sense of neighborly commitment as a matter of doing good. And I hope the world
will remember that we disabled folks, too, need others to look upon each of us
and say, “he ain’t heavy; he’s my brother.”
I think of Martin Luther King Jr.’s vision for the “beloved
community,” in which he challenges us to build a society founded on agape love.
Dr. King described agape love as
“understanding, redeeming goodwill for all,” an
“overflowing love which is purely spontaneous, unmotivated, groundless and
creative.” Agape love, he added, “does not begin by discriminating between
worthy and unworthy people…it begins by loving others for their sakes.”[iii] I
believe that the beloved community can exist, and I catch glimpses of it in the
hearts of the most special people I know. But until its value is recognized by
all, I must battle with the little ableist voice in my head that tells me,
“because of your disability, being kind to you is always a paying job.” A goal
of mine is to let others say, “You are my friend, I’ve got your back, and you
don’t owe me anything.” But more than that, my goal is to trust that its true.
[i]
Centers for Disease Control (2003). Data and
statistics. Retrieved from http://www.cdc.gov/ncbddd/cp/data.html
[ii] Marglin, S. A.
(2008). The dismal science: How thinking
like an economist undermines community, p. 23. Boston, MA: Harvard
University Press.
[iii] The King Center (2016). The King philosophy.
Retrieved from http://www.thekingcenter.org/king-philosophy
