In a recent scholarship application, I wrote about my
interest in people with differing abilities. A reader said I should use the
word “disabilities,” rather than sugar-coating the idea of disabilities with
the softening phrase “differing abilities.” In previous semantic lesson, when I
was applying to graduate school a few years ago, a friend told me to use
“people first” language: people with disabilities rather than disabled people.
And then in a research project I learned that “disabled people” is now preferred
by activists who want to be in your face. What to say?
I hadn’t actually chosen the phrase “people with differing
abilities,” but was quoting from a phrase that my friend Robin had written in a
document defining our mission in working to integrate Disability Studies into
the School of Social Work curriculum. (I know, surprising that we don’t learn
about people with disabilities already, but we don’t.)
Before I became a person with disabilities, I would have
said the same thing that my reader seemed to say: “Be honest with language.
Euphemisms are dishonest.” I am coming to think, however, that those of us with
disabilities are in fact differently abled.
In important ways, I am disabled: I can’t walk without a
cane, see singly without prism glasses, or make it through a whole day without
a nap like I did before brain surgery. I can’t drive a car, hike up a trail or
continue my teaching career. I can’t even cry out of both eyes or carry a
filled glass in my left hand. Often, I can’t open a bag of M&Ms or put in
earrings. These abilities I have lost. They are my disabilities.
To be honest, though, I have new abilities. Having had a lot
of practice in hospitals, I know my name, the date, and the president. I can
tell you the difference between 3 and 9 on the pain scale. I can slow down:
smell our roses, experience a poem, or wait patiently for the next bus. I can
often tell the difference between when I should get upset or anxious and when I
should just breathe deeply and know that whatever the irritation is really is
not that important. I can ask, “How are you?” and wait to hear the reply.
I speak in the vernacular, however: I say I’m a person with
disabilities rather than saying I am a person with different abilities so that
others will not think that I misunderstand or disbelieve my new life; in truth,
though, I am a person with different abilities than I had before or perhaps
than others who have not experienced serious disease.
I used to think euphemisms for death were also meek ways of
expressing what we were too cowardly to say: the euphemisms “lost”, “passed” or
(worse) “transitioned” were just linguistic back-flips to avoid recognizing a
hard truth.
For example, when my maternal grandmother went to see my
grandfather after his knee surgery in the hospital, a doctor pulled her into
her office and said, “Mrs. Matthews, we’ve lost Robert.” Confused by the
doctor’s language and often exasperated by my grandfather, my grandmother said,
“Oh, he’s just wandered off somewhere. We’ll find him.” The docyor’s euphemism
seemed to me cowardly and unkind. The doctor should have said, “Mrs. Matthews,
Robert died. I’m sorry.” The first role of language is to communicate. The
doctor did not. I still think the doctor was wrong.
My friend Pea, however, taught me about language and death
after her mother “passed.” Pea explained, “It did not seem to me that my mother
had died, had become a nothing. It seemed to me that she had passed into
another realm.” I believed Pea, and experienced this truth with my friend
Chris’s passing in January. I have also heard the word “transitioned” in these
months after Chris’s passing and in settings with relatives, chaplains and
health providers of those who are passing.
Once I would have thought that words like “passing” and “transitioning”
were white lies, gentler and perhaps more cowardly than saying “died.” Now,
however, I think passing and transitioning speak more honestly about what
happens to us at the end of this life. Maybe we are not so much afraid of death
as afraid not knowing. Maybe “passing” and “transitioning” are in fact truer expressions
of what happens to us.
Language that challenges our realities is hard. It’s hard
for me to think in ways that transcend my language.
For example, I have struggled with what verb tense to use
when I talk about Chris. We don’t seem to have the right tense in English. I
loved Chris when she lived in her body. I have always been an ashes-to-ashes
person, but now I need the eternal present. I loved Chris before. I love her
still. She loved me, and she loves me. Her kind and gentle spirit is with me. She
was always remarkably present. She still is.
I don’t know what this means, but I know this is so: Chris
is with us, not just as a memory or in our connections with one another—though
those are important too. In some way that I don’t understand, she remains here,
loving us.
My friend Wayne just passed, too. I'm just at the sad part with Wayne, not yet ready to be philosophical.
So often, when my experiences transcend the language I’ve
been taught, and I seek another way of speaking, my words sound too soft and
cowardly. But perhaps our world and our being are in fact gentler and more
loving than we’ve been taught.
Perhaps what language can reveal is that there are so many
ways of being, one not better than the rest but simply different.
The first time since my tumors that I wrote for a contest, I
entered an essay that I titled, “The Benefits of Brain Tumors.” The piece was
selected as a finalist but not the winner. I still remember how distasteful the
judge who read my piece found the idea that there is in fact an upside to brain
tumors. She wrote, “Your sense of humor makes this piece palatable.” Palatable?!
A couple of weeks ago, a friend told me that I represent
what those with tidier lives fear. When I walk slowly with a cane, they see
their vulnerability in me. I want to say to them (and to you if this applies) that
having disabilities is still living, just living in a different (and perhaps
more grateful) way. Like God’s always saying in the Bible—from a burning bush
or an angel—Do not be afraid. I bring to you good tidings.
Don’t get me wrong: if I’d had a choice I would not have
experienced brain tumors. I would still hike in the mountains and see a single
person (instead of two) when I look at an individual. I would not nap daily. I
would still run from moment to moment. I would still lie awake at night with
anxieties about situations I do not control. I would spend endless hours as a
principal watching high school football games.
Lucky for me, I could not choose. I live with different
abilities than I did before. I am less afraid than I was before. And that’s the
truth.
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