Every time I start to write about what it’s like to be disabled, to live with chronic pain, I am
eventually reminded by some well-meaning reader of The Rule: we’re not supposed to do that.
The Rule: Don’t Talk About Disability
We’re not supposed to talk about disabilities unless we are celebrating specific disabled individuals or groups excelling at something, “overcoming” their limitations. Paralympics, incredible achievements by someone often featured in a social media video – or on the Sunday Morning “human interest” segments on the local affiliate channels – with a soundtrack, all those folks who seemingly defied their “odds”. And we get reminded of when to turn on the tears. Then, it’s OK to talk it up, plug it, extol it, celebrate prodigious feats that anybody can do.
Particularly, crip-folks aren’t supposed to talk about their own disabilities, because that’s asking for pity. I mean, that’s just rude, right? I use the word ‘crip’ intentionally, because it’s ours — not theirs.
Why “Try Harder” is a Lie
Except – it’s all a lie. Not every disabled person can do “anything they set their mind to”.
This is a myth, designed to make the able-bodied feel good, and perversely proud of their less-
abled brethren.
And when someone, such as myself, dares challenge this myth, we are “wallowing in self-pity”, and if we would “just try harder, don’t let your limitations hold you back,” then we, too, could do just as wonderfully! This baloney nearly always emits from someone who is not disabled. I wonder why that is? Is it guilt? Or that feeling of discomfort the abled get when they are around disabled people, that they cover up with this sort of pablum? I cannot pretend to know their motives. But I clearly know the effect. As for pity? How inconvenient would that be?
Those of us with life-long disabilities are in a battle every day of our lives. We don’t have the slightest idea what it’s like to go as little as one day without our pain, without always being at an impasse maneuvering through the world. Maybe it’s the stair challenge for those in wheelchairs or walkers, or the impossibility of finding a job we can do without collapsing, because most crips can only find jobs that require we stand or walk. Which is precisely what slams our heads against reality and keeps us losing those jobs over and over again.
“Try harder” we keep getting told, but the truth is, we try far harder than the able bodied can begin to imagine, yet seldom get half as far. “Self-pity”, you are inclined to say, or at least think, yet you don’t even have the decency most of the time to actually want to know how we are doing. And because most disabled folks have long experienced what happens when telling the truth, most of the time we just lie and say “nothing”. Or, we actually say nothing.
How do you think most people with disabilities feel when they see another disabled person doing public speaking and parroting these same cringe-inducing phrases? Well, I can tell you: we feel shame, we feel lost, we feel we are even bigger failures than the world already daily assures us we are. Because we can’t be “that guy” or “that incredible woman”, we can’t even get out of bed some days with the pain, we haven’t had a real night’s sleep in years, we must be consumed by self-pity, we must be the failures we were told we would be by bullies, by teachers, hell, even by parents in many cases.
Oh, you didn’t know about that?
Silencing Our Pain
See? We’re not supposed to talk about this stuff. The doctors tell our parents to “make them work harder, they can overcome it” or “we fixed them, they can live a normal life now,” and when that turns out not to be the case, we are told we somehow “broke” whatever the doctors did “to make us whole.” And once we are out of their care, well, good luck. Deal with it. We’re not supposed to talk about this because it upsets our parents, our siblings, our doctors, the entire bleeding able-bodied public.
I’m in my 70’s, by the way, with two congenital disabilities, both which cause chronic pain that even narcotics fail to relieve. Living with the long-term effects of poorly-treated club feet, spina bifida occulta, and as I’ve recently learned, ankylosing spondylitis; all have extracted a significant toll. My spinal discs are crumbling, I’m at five fusions and counting.
When I wake up in the morning – every single day – I look down at my feet and wonder how many minutes of upright living will I be allotted today, before I collapse from the agony. You should try it
sometime.
Behind the “Inspiration” Mask
Recently, I viewed a video about a guy living with cerebral palsy. It was designed to inform us this brave man had overcome his disability, somehow put pain and social discomfort behind him, learned to live as though it provided no roadblocks to a “normal” life.
But that is not what I saw. I saw a guy doing what every disabled person does – struggle to make it through the day. Put his feelings in a nice container, wear the brave face, be a spokes-model and mentor and inspiration; basically, be a performing seal while the cameras roll. We always have to act as though “we got this” so we don’t upset the audience.
And then later, at home, out of sight of the adoring public – we break into pieces. We fall apart because no one is watching now, and we can let the pain drive us mad once more.
Chronic Pain and the Emotional Toll
The frustration of living with both a pain-filled disability AND having to spare the fragile feelings of the ableist community means never telling the whole truth. I’ve known several crips in my life who imagine suicide with some frequency. They have no urge to carry through, but the act of waking every day to the disappointment of facing yet another day of pain is a Sisyphean undertaking. And it might help to remember: thinking of ending the program isn’t an indication of intent. Rather, it is an acknowledgment of the futility of being open about our reality. Because if we do, well, there are consequences, and who needs that sort of interference in their life?
In reality, every disabled person experiences life on a continuum, just like anyone else. Through their levels of pain, in their shadings of abilities, interests, familial support (or lack thereof), their fights with depression and anger, desires for love and acceptance, their fears and their moments of collapse. And yes, their hopes and capacity for excelling at life, in whatever form they might be able, all driven by their own internal angels and demons. Just like most people.
We’re Not Here to Make You Comfortable
In the process of walking our particular paths, most of us would ask able-bodied folks for one thing in particular: stop expecting us to fit your continuum, so you can feel good. Many of us hurt, badly, many are tired of having to fit the standard disabled model, because we don’t, and we don’t want to, either. We want a little understanding when we can’t get to work because of our pain. We’d like to be able to go places without having twenty more burdens placed on our backs. Without having to say “please” all the time.
We want to be able to tell you our truths, and if you really don’t want to hear them, don’t bother asking. Because you’re really telling us we’d best shut up, keep it to ourselves. We don’t want to be your role models, to have to overcome in public what we cannot even begin to deal with in private. We don’t want your pity, but more importantly, we are tired of being told we must not have pity for ourselves, to not express our despair and depression, our pain, our loneliness -our rage.
Essentially, we’re tired of keeping our mouths shut, to protect false ableist images of us amazing disabled people. So, yeah… not gonna do that anymore.
Coda: No Irony. Just Truth.
So, as I always do, I went back to edit, shed weight, check tone, etc. And as I re-read the last bit, just above, I was struck by an unexpected awareness: throughout, just beneath the surface, I went through almost every emotional state. Not consciously, but they were there.
Anger, sarcasm, frustration, rage, exhaustion. But there was one emotional response I did not feel, nor express in the writing. Irony. And, I usually have a strong ironic voice.
But not with this topic – there’s nothing ironic for me. I suspect that’s also the case with most disabled people. Irony tends to look down its nose at the subject, or its perpetrator. Using irony as a means to show someone their self-delusion can be effective under narrow circumstances. But it nearly always lacks compassion – and passion.
Still, I said what I feel, and what I mean. This is not a retraction, nor apology. I have my faults. Timidity isn’t one of them.
Bio:
Notty Bumbo is a poet, writer, and artist living in Fort Bragg, California. His work has appeared in a number of small journals and presses, including Amphigoric Sauce Factory, Words Without Walls, Poesis, Telling Our Stories Press, Peacock Journal, Calabash Cadence’ Taisgeadan, Word Fountain, Poetry South, Extreme: An Anthology for Social and Environmental Justice by Vagabond Press, and Writers of the Mendocino Coast: Anthology – Resilience, 2025, among others.
Living with multiple congenital disabilities and chronic pain, Notty writes with razor-sharp clarity and unflinching honesty. His work challenges sanitized narratives about disability and insists on telling the truths most people would rather ignore.
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