This poem is published as part of the Amplifying Disabled Voices special section, selected by editors Christopher Heuer, Marlena Chertock, and Gregory Luce.
Being Well Is Not
Binary
You consider this, munching on handfuls of nicotine gum.
What with cells and their porous membranes—
boundaries undefined.
“How are you feeling?” the doctor asks.
“I’m fine, thanks…” off your tongue—reflexive words leap,
like a fawn that won’t see the car
till it’s too late.
What he doesn’t know can’t hurt
him—only you and your disability forms:
you tick the box.
“Out of 10, how well are you?”
You’re back in math class again, wrestling with an unsolvable sum.
What’s the right answer? Observe:
Porous membranes grow thick—defined edges like boxes
we must tick—be quick—
the appointment is only 10 minutes.
Your migraine returns, the paperwork doubles,
seeing everything in two. Two of you:
is “well-you” and “unwell-you” the same?
The ‘varying’ box you’d tick—
if it existed—
but it doesn’t, not in public.
Bad days, zero-spoon days,
‘none-to-scrape-the-ground, to-dig-yourself-out’ days.
But if you do—discounted,
when someone sees you do one thing.
Panopticon. Surveillance—
more monitoring than your bloods get.
And you’re deficient in plenty—
neutrophils, for starters,
to protect—work so hard, they’re running out—
the poor things don’t know they can’t
protect you from the outside
when “outside” is a box to tick.
And if the tick-box is wrong,
there’s a bigger box they’ll sit you in.
Maria Lightwood is an autistic, ACE funded writer and disability advocate. Her novel-in-progress, Fractured Tadpoles Grow in the Dark, was shortlisted by Curtis Brown Creative. She has been awarded a place on ITV’s Mentoring Programme and the National Centre for Writing x TLC Free Reads programme. Her flash fiction Sleeping Dogs Lie in Fetal Position received an Honourable Mention in the CRAFT Flash Prose Prize, judged by Meg Pokrass. Maria’s work is shaped by lived experience of multiple disabilities, a refugee and poverty background, and estrangement following a violent upbringing. With no family safety net, she is building a life through writing— with the ambition to redefine disability representation in literature. Most recently, she became a Lead Author for an upcoming feature on Disabled Leaders, published by the Disability Action Research Kollective (DARK), a prominent disabled-led radical publication. She is also contributing to an ACE-funded Reflecting Realities project, and was selected for the CRIPtic x Spread the Word Salon with Cathy Reay.
Featured image in this post is, “Penetentiary Panopticon Plan” By Jeremy Bentham – licensed creative commons via Wikimedia Commons.
