Posts

Spellbound

A couple of days ago at work I found myself being shouted at by a man who couldn't hear me except when I said what he wanted to hear. He didn't say so, exactly. But he told me he couldn't hear me when I told him I couldn't help him and he responded when I said I could, just for a short bit, but not everything ! And then, somehow, I did it again--the no-i-can't-help-maybe-just-a-bit-okay-fine-yes . Like I'm under a spell, or a few--his anger, my need to keep the room quiet, the simple fact that I didn't have anywhere to go). It's the kind of anger that makes your brain slow down a bit--I was shaking as I tried to answer emails, had to work harder to speak, suddenly found myself forgetting how to do basic tech support. Anger--particularly that of older white men, in my experience--is powerful. Too powerful. And I wonder what it's like to wield that anger. Not because I want to wield it, mind you, but because I want to know that I would be aware of it i

spike proteins are too pretty for us

I could have sworn that just yesterday that magnolia bulb was just a fuzzy mound of pink but now it’s dotted with bright red seeds and looking like that classic spiky rendering of the coronavirus. It’s everywhere. I know, I know, but let me enjoy the image. It’s sudden, this blood-bright flash, but sudden as well to leave. The next time I look it seems that seeds have already started to fall, drip-dropping onto the leafy ground. It’s fast . I know, I know, watching it spreading and shrinking.

Puddle

This poem is inspired by my friend Elise/badorchid's new EP "fool at the puddle portal" ( listen + buy on Bandcamp ). It's more minimalist than my usual poetry, in accordance with the sparse, deliberate instrumentation of Elise's music.   Puddle the flood never felt like water small hope sticks to you there's something wordless in between sparse ships sail over the horizon ghost boats fray the ordinary trim the sails drift wood floating here on  the edge of the world the light dims, then brightens like wondering hoping the green flash the sun done down into the depths of the sea again

Vision Thing (not that one)

It's about a month now since I started wearing an eye patch. I had seen it coming for a while (there's a sight loss and/or depth perception joke in here somewhere, I'm certain) But even so, it's been a bit of an adjustment. Due to other issues, I was born with unusually (and unhelpfully) thin eyes, which results in various issues. My left eye is especially thin and thus especially troublesome, hence the patch. As my vision issues have come to a head I've lately found myself focusing more on visual art than writing. This isn't as counterintuitive as it seems, since the nature of my particular issues makes working on paper and with shapes easier than working with letters and computers (I do first drafts of poems in my journal, but later drafts and essays always happen on my laptop).    This means that my visual art is increasingly tied to vision loss. No doubt I'm not alone in this, but it's odd to navigate. It also means that I haven't been writ

How to live alone

For the past year-ish I've been struggling with the idea of autonomy in a living situation. While living alone offers some theoretical advantages in terms of how you decorate the space or how you budget, when your disability situation is like mine (in that you don't need assistance for all your daily tasks but do for things like doing your shopping) there is a level of autonomy to be gained by having a roommate because it means that you ideally have a better relationship with the person who allows certain things to get done in your house. Disabled living autonomy is not the binary that it is for many non-disabled people, where less involvement from others means more freedom of choice. After so much thinking and journaling about this, I wish I had something more constructive to say, but I wanted to post this anyway since it's not something I've seen many people talking about and perhaps if I start it will lead somewhere.

Friendly Neighborhood Piebald Deer

There's a piebald deer that lives in my neighborhood. Easily identifiable by the white (or more accurately, un-pigmented) splotches that cover most of its body, I've spent way more time thinking about it than any other deer I've encountered. Though piebaldism and other pigmentation disorders generally put animals at a disadvantage in the wild, here my spotty friend is presumably no less suited to an urban area than any other deer. If anything, it may be an evolutionary advantage to shine so brightly in headlights. I remember in high school having a chemistry project delayed because someone in my lab group hit a deer on his way to school. This was a more rural area, where roadkill was plentiful and drives long. I lived off of one of the busier roads in the area and remember waking one day to find a dead deer in our driveway. Initially, the county resisted coming to collect the corpse, claiming that the couple last feet the dying creature had managed to stumble onto our prope

Comfort

Okay so What if we lived in a time/place where We could just go anywhere No stairs/stares to touch us To push us away (the only pushing is up hills laughing/in community because everyone needs help sometimes and access is love/everything) And anything I've learned about How to be a person I've learned from my disability Like: how to be happy how to rest how to talk when it's hard/distant how to be here/this when you'd rather be anywhere/anything else   See that's my life/body and I Just want the world To make it a bit easier to be here/together right now Maybe: getting coffee with a friend or doing my own shopping or just leaving the dang house (small/simple stuff that's also big deal stuff, at least in its absence)   Disability means I don't take things For granted and I'm glad of that But I also don't see virtue In vigilance, necessarily, and I think there's value in comfort, Not just the kind with pillows and heating pads That disabled/ill fol

Growing Into All This

For my birthday a couple months ago, my brother gave me a coupon and entitling me to one homemade baked good of my choosing. I finally got around to having him make me some challah. So now I have fresh challah (and quite a quantity at that) but I still don't really feel like I'm 22 and I'm not sure why. If I had to guess, it's some combination of people treating me like a little kid because I'm disabled   living in my family's house   not having interacted face-to-face with anyone my age in a good long while   general weirdness about the passage of time thanks to the pandemic To some extent, I'm not sure if or why matters that my gut says I'm only 20, maybe 21 some days. I'm not someone who generally thinks a whole lot about the implications of my age or whether I'm younger/older than the people around me. And yet, I've been thinking about it--not that often, but often enough that I'm probably not allowed to say I don't thin
I'm still not back to blogging as consistently as I had hoped, but wanted to pop in to say that a little write-up of me/my residency at LEVƎ⅃ is up on their website now: levelretreat.com/residencies/009-samir-knego

Saving up for something

My friend gave me a rosary with blessings from the shrine in her hometown of Međugorje, a site of Marian apparitions. I waited to pray with it, thinking I would save it for the perfect moment when I really needed Mary’s extra-special blessing. And then I saved it some more. And kept saving it. It’s now been a few years since she gave me the rosary, and I don’t think I’ve ever prayed it.* I imagine the magic of the rosary seeping out of it over time, gently infusing my clothes, linens, and letters. Bringing the sacred into my everyday life, because I waited too long to do it myself. I thank Mary for not letting me put off blessedness, or think that faith needs to be separate, perfect, timed. I thank Mary for accidents, for unpredictability, for ambient love. We need all of it. * Looking back, I know I overthought it. Haven’t there been enough moments that need that Mary magic?   But then again , I think, won’t there be so many more?

Let Us Rejoice

Easter was many weeks ago now, but seeing as it's not Pentecost just yet I think I'm allowed to get in one more word before next year (also, I've been sitting on this in my journal for a while and didn't want to lost it).  on the second Sunday of Easter The Christ of Easter is not the Christ of miracles, of megachurches, of pomp and circumstance. Fundamentally, the Christ of Easter is a broken Christ, a failed messiah, a persecuted man. Easter is a victory of sorts, I suppose, but it’s a victory that comes from a place of loss/hardship/brokenness, not a victory over those things. “This is the day the Lord has made; let us be glad and rejoice in it” And these are the bodies and minds we have been given; let us be proud and rejoice in them.

Accidental Educator

Today's post is something I originally wrote on my application to the LEVƎ⅃ . I had been thinking about how, while my work is not explicitly educational in nature, my disability justice advocacy in other arenas (and, frankly, my being disabled) has caused people to see it as such. I've been chosen as LEVƎ⅃'s Spring 2021 Artist-In-Residence(!!!) and the folks from LEVƎ⅃ mentioned appreciating this. I thought others might appreciate it too! My work is rooted in disability justice work. Often, it has ended up serving an (at least somewhat) educational purpose, whether I really wanted it to or not. I think that this position of being an accidental educator is one that many marginalized artists experience, and one I have very mixed feelings about. I recognize the ways that my work's relation to sociopolitical issues makes it compelling or valuable to some people, and I also would like to live in a world where my work has value beyond its/my marginalization. 

A Brief History of Movement

The earliest self-propelled wheelchairs had more in common with the yet-to-be-invented bicycle (or handcycle) than a modern manual wheelchair, fitted as they were with gears around the front wheels and hand pedals used to turn them. This design was developed by Stephan Farfler, a German clockmaker and paraplegic who pioneered the design at age 22.  He was inspired by the clocks he worked on professionally, and created a tricycle-like contraption with a series of cogs and gears that allowed the user to use their hands to turn the cranks connected to the front wheel. It is easy to approach history in general, and particularly the history of wheelchairs, as a story of progress. To be sure, the course of the history of wheelchairs and mobility aids has brought increasing independence to an increasing number of disabled people. Generally, when I think of old wheelchairs I think of wood and wicker--uncomfortable, unwieldy seats for glum people in old pictures. In short: nothing that makes me

The Opposite of Empathy

When the tide goes out, and stays there   “empathy” comes from the Greek word empatheia , or passion, but to call a lack of empathy merely dispassionate seems like a disservice to the hurt it causes   apathy , obduracy, callosity What you don’t say when you know you should   What you say when you know you shouldn’t   In Portuguese, one way of talking about empathy is sensibilidade , which involves sensitivity as well as empathy. It’s opposite, insensibilidade , can be translated as     insensitivity, insensibility, unfeelingness   Like a pen that’s run out of ink

One year on(line)

Throughout the pandemic, I've been thinking about how I would be going through this if I was still in high school. My family didn't get home internet until I was in my senior year of high school (which I realize is not itself unusual, but it is fairly unusual among people my age) due in part to it being wildly expensive in the rural area where we lived.  My school district put a big emphasis on having people use computers and develop computer skills, and most of our assignments in Google Docs. To their credit, the district realized that there was unequal access to technology and provided middle and high schoolers with loaner laptops, but unfortunately didn't provide any sort of internet hotspots. It's slightly depressing to think of how much time my family spent driving into town to use the library or (more often, since the library closed pretty early) camp outside the grocery store-restaurant and steal their wifi so my brothers and I could do our homework.   I genuinel

Ciao, for now

At the beginning of 2020, I promised myself I'd try my best to blog weekly. I haven't always been totally successful at that, but given how 2020 ended up I'm pretty happy with my performance. More recently, I've been fortunate enough to have an increasing number of opportunities to write elsewhere, and so I'm going to bring my regular blogging to an end, at least for the time being. I'm sure I'll be back eventually. Looking back at the past year of blogging, there are lots of posts I'm proud of, but here are 3: Disability and Christianity series What if you couldn't wear a mask? Bubbles   I'll continue to keep my links page updated if you'd like to stay updated on my work. If you're a writer yourself, I'd encourage you to pitch me lifestyle pieces for dubble (disabled writers only) or submit to Decolonial Passage . Goodbye, -Samir

Someone should write something about that

Here are some of the half-baked article ideas I've had recently--stuff I realized I'm more interested in reading about than writing about.  Side note: if you're a disabled/chronically ill writer, you can always pitch lifestyle pieces (on these topics or others) to me at samir.dubble[at]gmail[dot]com for dubble  Conflicting accessibilities--this refers to  when what makes things more accessible for some disabilities is harmful for others (see this from Imani Barbarin). I'm interested in how we (as individuals/disability community) navigate conflicting accessibility needs without interpersonal conflict? I could see a piece like this bringing in elements of conflict resolution studies. Workplace recommendations around disability--In my experience, the main recommendation is "don't disclose your disability until you're hired." Of course, this is much less useful advice when you have a visible disability that discloses itself, and I'd be interested to

Misericórdia

Lately I've been thinking about the Portuguese word misericórdia (mercy),a false semi-cognate for "misery." I've mostly encountered misericórdia in the context of religion, specifically Catholicism. For all the jokes people make about "good Catholic suffering," I think my willingness to associate misericórdia and misery--if only half-thinkingly--comes from something more complicated. For many, faith is a way out of misery. We live in a difficult and often miserable world, and whereas capitalism tries to convince us that that is inevitable, even just, faith (at its best) calls us to imagine a better world. Faith--at least for me--is linked to misery not as cause-effect but as patient companion. Catholicism touches on misery because misery is so ubiquitous, and because religions are ultimately about people, many of whom experience varying degrees of misery. I think that there is mercy to be found in acknowledging the existence of misery, and our duty to work t

Jeanette Winterson’s Exodus

Here's another piece from the past, lightly revised and edited. Jeanette Winterson’s novel Oranges Are Not the Only Fruit features frequent biblical allusions and narratives of church life and Bible-thumping, but one thing is conspicuously absent: God.    Jeanette does not recount experiences of the ‘personal relationship’ with God or Christ that is a hallmark of evangelical Protestant traditions like the one she grew up with.    One particularly prominent example of this lack of God talk is in the chapter titled “Exodus,” in a section referencing the eponymous biblical book. While talking about Jeanette feeling upset and confused about her school, Winterson writes that “When the children of Israel left Egypt, they were guided by the pillar of cloud by day, and the pillar of fire by night. For them, this did not seem to be a problem. For me [...] the pillar of cloud was a fog, perplexing and impossible”(47).    In Exodus 13:21, the author specifies that “the Lord went in front of

Advent, again

It's the first Sunday of advent, and I'm cobbling together a wreath. Four candles, the wrong colors (3 red; 1 purple--not the farthest from tradition). One green enamel plate. Several pieces of paper, colored green and arranged around the edges. That's Advent 2020--we're all doing the best we can.   I wish I had more to say about this day, but I can't seem to muster the words at the moment. Instead, here's an Advent poem that a friend shared on Twitter the other day (you can also find it here ) "Adult Advent Announcement" by David A. Redding O Lord, Let Advent begin again In us, Not merely in commercials; For that first Christmas was not Simply for children, But for the Wise and the strong. It was Crowded around that cradle, With kings kneeling. Speak to us Who seek an adult seat this year. Help us to realize, As we fill stockings, Christmas is mainly For the old folks — Bent backs And tired eyes Need relief and light A little more.