Archive for the 'Making Disability Visible' category

Shredding Event

Some few weeks ago my township held a semi-annual "shredding event", an occasion for citizens to bring forth their accumulated piles of dossiers and documents to be fed into a giant communal shredder, lest our identities be filched and/or days of our lives given over to feeding two sheets of paper at a time into our home shredders.

This was my pile:

To be shredded...

To be shredded...

It might have been much bigger but that was all I could part with at the time.

The pile contained all the Medicare statements and Blue Cross EOB forms I had received for my mother during the time I was her power of attorney. I held on to these until her estate was closed and we were sure all outstanding issues and bills were resolved. It has been many months since the estate closed and I have no further legal need of these documents. But I found it surprisingly hard to let them go.

I browsed through them and their listings of date of service, provider, and service provided. I remembered many of these "services provided", some quite vividly. There were routine doctor visits on which I had accompanied her. There were the "pain shots", the epidural steroids to relieve the pain of her spinal stenosis. Organizing those was like planning the invasion of Normandy, given the astonishing difficulty in communicating with the doctor's office; the need to coordinate scheduling with availability of someone to take her there; and the trickiness of managing all this for someone taking coumadin.  There were the ER visits for falls and other minor emergencies. There was the mountainous paper trail generated near the end, when she bounced from assisted living to hospital to rehab hospital to nursing home and back around till the final bounce home to die. Sometimes I looked at dates and events in disbelief: did that really happen then? so close to the time she died? did all those things really happen so close to one another? Or, oh my god I totally forgot about THAT! How strange, I thought, that these impersonal medical records hold memories of my mother I'm struggling to piece together.

When my father died (young, in his fifties), my mother was devastated. She could not bear the idea that he would go underground. When my brother died, eight months before my mother, we helped her to her feet beside his coffin in the funeral home for the "last goodbye". Though she could barely stand she kind of launched herself at him, weeping over his dead form and declaring "oh Paul, it won't be long, I'll be coming after you." She did not want him to go underground, either.

When she lay dying at home, mostly robbed of speech, she communicated to me one day with great difficulty: "I'm afraid to go in the ground." I don't remember what I said to comfort her beyond "I know" and "I'm sorry" and maybe the pitiful "it will be okay".  I don't know why I didn't ask her why this fear was so strong. Lifelong devout Catholic, each Sunday at Mass she recited "I believe in...the resurrection of the body and life everlasting" and yet in the face of death it appeared this was cold comfort. When her youngest brother, the one she raised from age seven, died before her and was cremated, she did not like that any better. She fretted over how his body would be resurrected at the end of the world. I tried to assure her that if God could do anything, He could surely put her brother's ashes back together in the form of his body. She remained unconvinced.

When she died it was some time before I could leave her side. This parting, unlike every one before it, would not be followed by seeing her smile yet one more time.

I believed I was relatively blasé about the subject of corpses and what should be done with them; I often told Mr. Z he should have mine turned into compost for my garden. At the funeral home, it did not seem to me as if it were her lying there. In the bustle at the house the morning after her death, we could not find her glasses. Lying there without them, that face could have been a wax doll.

And then at the cemetery, the graveside service ended, I wept the tears of a motherless child. I did not want to leave. I knew they would put her in the ground when we left. And she did not want that. It did not matter that she was beyond wanting. Finally, my younger sister said through her sobs and tears, "We have to let her go. Come on. We have to let her go." It was like breaking a spell; her words gave me permission to leave. I let her go, I let her go underground.

A week or so after the funeral my younger sister and I both had the same experience. It was a physical sensation of lightening, as if someone had just removed a very heavy backback from our shoulders. It was not just a mental uplift; we were both still very sad, and actually perplexed by the physical sensation. It was very distinct, and strong. I can only describe it thus: it felt as if I had been literally carrying something on my shoulders, and someone had lifted it off of me. Not that I had set it down, but that the weight had been lifted off me. I had a constant feeling of that sudden lightening for about two weeks. My sister, the same.

I also quit having migraines for three months. My doctors thought that it was the reduction in stress that allowed me to stop having migraines, but I didn't think so. (For one thing, I still had all my worries about my in-laws, and while I no longer had power-of-attorney duties, I now had executor duties for the estate.) I felt that my body chemistry had been altered by grief. I felt that my body was so physically preoccupied with the sensations of grief and loss, that it had no resources, so to speak, to devote to experiencing migraines. In this way, it was similar to the period just after I had my stroke, when I was almost completely blind. I had no migraines then, either. They did not come back until my sight recovered to the point where the place in my visual field where auras formed was functioning again. After my mother's death, my migraines did not come back until I was no longer completely blinded by grief to the world around me.

Time heals all wounds, as they say, whether you want it to or not. Eventually grief lessens, the sharpness of pain dulls, the loved one recedes into memory, which is unreliable, and must be pieced together through written records and conversations with others. Sending the medical records to the shredder was sending a pile of recorded memory to oblivion. If memory is all that is left, how can we bear to part with even one tiny morsel, no matter how bitter its taste? And yet doctor's appointments and ER visits are memories perhaps not worth savoring. There are so many, they dull the taste of anything sweeter.

I gave my folders to the township for shredding. I let them go. Death is cold, the ground dark and silent, but I remember warm evenings at dinner with mom, in the summer at Apple Annie's in Point Marion, the two of us talking, and her smile.

mom apple annies [640x480]

3 responses so far

Spousal Support Part 2

It was last weekend I decided the grease-stained stainless steel tea kettle with the half-missing whistle spout had reach the unbearably uncleanable stage. "It's time to throw this out and buy a new one!" I said. Mr. Z agreed. "I'm going to buy a new one this afternoon!" I declared as I tossed the old one in the trash.

A few moments later Mr. Z said, "When are you going to get a new tea kettle?" He sounded kind of uneasy.

"In a few hours, when I go out to get the lemons. The Giant Box Housegoods store is in the same plaza as the grocery store."

"Maybe you should keep the old one for now, until you get the new one," he suggested.

"Why on earth would I keep that disgusting tea kettle for two more hours when I am going right out to get a new one?"

He hesitated. "Well...that's a lot of time between now and then. Anything could happen. You could have a migraine by then and not be able to go." Pause. "That's just how I think these days."

My heart broke with love and sadness. I said, "It makes me feel really loved to know that you would worry about me. But I feel so bad to know that you worry so much that you feel like that. I don't want to be a burden to you." I said, "If I have a migraine and can't get the tea kettle, we'll boil water in a pot on the stove. We'll boil water in the microwave. We'll manage. It's summer and we aren't drinking tea much anyway."

Dear reader, I was trying to tell him I can still cope with life even if, even when, the migraine strikes. But he knows I can't cope as well. And despite the neurologist's assurance that with ten years past, my stroke risk is just the same as any other woman my age, he sees every migraine as the terrifying potential prelude to another stroke.

Right now there are Things going on, Serious Things, with his parents, and that seems to keep changing every day. The ground underfoot is shifting, uneven, treacherous. He wants to be able to count on me going out to buy the teapot. But he can't. And neither can I, truly. The migraines have been a little worse lately. Chocolate is still my friend, but it seems peanuts, bananas, yogurt, and milk have deserted me. (But not raw onion! I can still eat raw onion! At least the scallions.) Either that, or there's a med that still needs some adjusting. I'm crossing my fingers for the med.

Right now he needs my support as much as I ever needed his. He's not a talker; what he needs is as much stability and sense of homey-ness, calm and order in our house that can be provided. He knows I hide headaches from him so as not to worry about him. So every time I'm in the bathroom if he thinks he hears a pill bottle he interrogates me: do I have a headache? what am I taking? shouldn't I go lay down? Meanwhile I know he hides a lot of the news about the Serious Things so as not to distress me any more (because I have my own family things, and lost a brother and mother in the past two years, and then just this past month my mother's sister passed.) So every time he goes outside to talk on the cell phone I think it's his sister, and more bad news, and I worry about extreme scenarios, but don't ask, because he's not a talker, and I don't want to make him talk if he doesn't want to.

He says I do a lot to help him, but because none of what I do that helps him is what I would want done for me, I feel like I'm doing nothing. And I don't know what I'd do without him, but because he can't magically prevent or stop my migraines, he often feels he is not doing anything of value for me.

If you are a talker, say thanks to your spouse for the support. If you are a doer, do something to show your thanks.

If you are in a talker/doer relationship: talkers, please try to recognize what the doers are saying with their doing; doers, please try to understand what the talkers need to do with their talking.

In the advanced talker/doer relationship, doers can endure and even start small conversations with their talker, and talkers can learn silence and the value  of "now" for getting around to that Thing That Needs Doing.

6 responses so far

Spousal Support (Part 1)

Aug 04 2014 Published by under Making Disability Visible, Naming Experience

Of all the discouraging wounds that post-stroke migraines bestowed upon me, by far the worst was turning chocolate into my enemy.

(Regular Zuskateers know that about a decade ago I had a migrainous stroke, and the stroke itself made my migraines worse, to the point that I was forced to quit working. I have never yet been able to return to the workforce.)

Right at the first, nearly blind, I had no migraines at all. Alas they were not rooted out. As my vision returned, the migraines crept back into my life.  Have you seen English ivy working its uninvited way up a tree? Even an oak must eventually succumb to the slow smother. So it was for me as the migraines in time had me felled, bedridden in pain.

Before the stroke I had never really had what one may call "triggers" - specific foods or events that were reliably connected to production of a migraine. After the stroke the world around me rapidly mutated into one big trigger, as once innocent foods and things and weather turned on me. Raw onions; then cooked onions; then anything with the slightest amount of onion powder in it - even ketchup, even the dollop you might put on a hamburger.  Peanut butter; then yogurt; then bananas. Red wine goes without saying, and while we're at it, say nothing about any form of alcohol. One day, it was just a single small whiff of someone's cigar smoke from afar that did me in.

Visual triggers were now a problem, too. Many things interacted with my scotoma, a remnant of my stroke-blindness. Switching tv channels too rapidly. Bright sunlight on winter afternoons. Very busy lighted displays in an electronics store. The cover of Oliver Sack's book "Migraine", depicting a painting by a migraneur of his mosaic aura. Any depiction of a visual aura.  Looking at the rotating rows of corn on a cob as I rolled it in butter.

I had once pooh-poohed the notion that changes in the weather could cause a migraine, but no more. Every approaching thunderstorm made my head ache, or ache worse if already sore.

There was so little left that I could eat - everything had onion powder in it. There was so little I could safely look at and be certain of unmenacing ocularity.  There was nowhere I could hide, for we lived in Kansas, and Kansas was always having thunderstorms drop by to visit.

But I still had chocolate. Chocolate was my friend. It would never hurt me.

Until it did. With a vengeance.

Mr. Z theorized that it was cheap chocolate that hated me and that high-end chocolate would do me no harm.  Naturally the experiment must be done! We bought the best we could find. I took one eager bite of one most desirably delicious truffle and BAM! You go to your room right now, young lady, and stay on your bed! No playing with any of your toys till you think about what you've done and say you're sorry!

During this period I slid into despair about my life, about its ever-narrowing, tighter, restrictive circle. I wept openly to Mr. Z that all was now pointless. He gripped me firmly by the shoulders, looked me straight in the eye, and said:

"Someday, this will change. Someday you will eat raw onion again. I know it."

Well, he might as well have said "Someday, wild geese will voluntarily stop shitting all over the sidewalks next to every little man-made pond." It was that ridiculous. He didn't even say "you will eat chocolate"; he went straight to raw onion, the first and worst of my enemies.  But he said it with such gentle strength and force of conviction that I believed him.

I asked him if he really thought so, and he said yes, and did he promise, and he said yes, and there was a hug and a kiss, and I believed.  This, Zuskateers, is the only time in my life I have ever felt actual faith. I had absolutely no evidence, nothing to go on, no reason to suggest that I would ever again eat raw onion atop a hamburger on a bun with a dollop of ketchup and smile afterwards. But I let loose my despair, and shouldered up just the backpack of pain and depression. Perhaps, just perhaps, I would eat onion someday.

This man, Zuskateers, had seen every bit of my journey. He stood by me night and day and never uttered a single complaint about his burden. No whining about how we didn't go out to restaurants anymore, or the foods we didn't eat anymore (because an ill person and a working person don't have strength and time to cook separate meals), or the places we didn't go together, or the necessity of issuing warnings for tv channel surfing, or the need to wait on me with food and drink and medicine when I was wrapped solid in migraine vines. No fuss about the endless doctor appointments. He offered me the tender care a mother would give a beloved child.  And he lent me his strength to carry on at the moment I was most in need.

Over time, his continued care and regular botox treatments vanquished the enemies, one by one. The last shall be first, and the first last - Chocolate, o my beloved Chocolate! You are once again mine!

And so on, and so on, until sometime five or six years ago, my dear Zuskateers, I. ate. raw. onion. I did! I did! I did!

5 responses so far

Things That Keep Me From Blogging

Disorganization. Procrastination. Endless estate paperwork and ensuing depression.

Trips back to western PA to empty out the house, and ensuing depression. Knowing the house is finally empty, putting it on the market, selling it two days later, and ensuing depression.

Sunday evening making a cake while dreaming about renovating my ugly kitchen when suddenly the power goes out because the electric panel died, 24 hours before a planned trip so hello emergency electrician, goodbye 10% reno budget...and cue ensuing depression. While a supposed-to-be vacation week is suddenly and terrifyingly made a visit-to-the-hospital week, returning home with worry worry worry on the mind, and ensuing depression.

A garden that was the source of pleasure and rejuvenation now overrun with weeds, baked dry as a bone, plants dying or suffering powdery mildew - in just one week! - looking like an eyesore and a hopeless chore, and ensuing depression.

Some hours on the phone for a $$$ doctor's bill the insurance won't pay, for the same test they paid for a month prior, submitted with an incorrect procedure code, impossible! for the aggressive billing office to deal with in any way, and ensuing depression.

No thing is unbearable, but everything is. No thing is impossible to deal with, but everything is difficult and draining and filled with despair.

No thing keeps me from blogging, but everything does.

7 responses so far

Bag Nights and Authenticity

On the twitters today I saw this from @TomLevenson

 

The link is to a post called Viewfinder Hours by Thom Hogan that suggests authenticity of voice can be gauged by the "Bag Night" metric.

Back in my days running Backpacker magazine, we had an “authenticity” metric that we developed and practiced. I think it’s time for that here in the photography arena, as well. The Backpacker metric was “bag nights.” You got a bag night if you spent your sleeping hours in a sleeping bag in the wild (not your backyard ;~)...Authenticity is important. It means that your opinions are based upon real use and not casual contact with something. The Internet is filled with non-authentic opinions. That’s not to say that there aren’t plenty of authentic ones, only that it’s often difficult to discern which is which.

Hogan suggests an analogous metric of "viewfinder hours" for those who use and write about cameras. Those with more viewfinder hours would have more cred, wouldn't they? You'd take their opinion under more serious consideration.  @TomLevenson says we could apply a similar metric to writing or any other creative work.

My first reaction was wow, that's a great idea. And keeping track of your [insert creative endeavor] hours would be a kind of incentive to make time for your creative labor, and to do actually do it, shitty first drafts and all. And then...then I had second thoughts. Which I promptly put aside for several hours while I tended to a headache.

So, the second thoughts:

The metric BlaBla Hours as a badge of authenticity doesn't sit well with me for a number of reasons. Practice makes perfect, we say, and to some extent the time logged at any activity is going to yield improvement. But there is also the law of diminishing returns.

I once spent a month in the lab of a top researcher that my PI's lab cooperated with. She tended to attract almost all female students, postdocs, and even lab techs. Her lab was very productive and highly regarded. Several of her postdocs/grad students had children while working with her. She told me what advice she gave them about mixing family and work (I'm paraphrasing): when you're at the lab, leave family behind and do your work 100%. When you leave, leave the lab behind and be with your family 100%. And, she said to me with emphasis, no one can say that [her postdocs/grad students] have been any less productive or have done work of any less quality than any other groups we competed/compared with. This was true. She ran her lab in total anti-K3rn style, and she was a great success.

BlaBla Hours is a metric that, without context, tends to reward those with the fewest constraints on their lives - people without responsibility for children or elders or a chronically ill spouse; people without chronic illness or disability that impairs accumulation of BlaBla Hours; people with sufficient resources to afford the time and equipment necessary to accumulate BlaBla Hours; people whose BlaBla Hours will be recognized and acknowledged as such by the Powers That Be. (Bag nights in the wild only - what do you mean, urban science?  A smart camera phone? You need the V3XLR-22bi Pro! Writing for women's magazines? That's not real writing!)

It is possible to speak with authenticity, to add real value to the conversation, even if you can't rack up the most BlaBla Hours ever. BlaBla Hours is a metric that can tell you something, but not everything. Without context and without other information, it turns into just another version of Face Time At Work. BlaBla Hours is a metric that's probably most useful for you to evaluate your progress to a goal, rather than for others to evaluate you.

It all reminds me of when science bloggers tried to authenticate science blogging by putting a little stamp on blogs that authentically blogged about authentic science. It was a lovely idea, except it didn't include any way to authentically authenticate authentic blogging about authentic issues of gender/race/sexuality/ageism/class in science. Of course that's not actually science blogging so it wasn't really a huge problem for the authenticators.  If BlaBla Hours is just a metric for people who can really spend the time really doing real BlaBla, then none of that other stuff I talked about matters either.

 

3 responses so far

I Held You In My Arms As You Once Held Me In Yours

This is something I wrote three years ago but never posted. I decided to share it because mom is on my mind, and because I want to encourage those of you involved in elder care to consider keeping a journal. I did write some during my years caring for mom, but not regularly, and not nearly enough. I wish I could have all my time with her back in writing. Here is one bit I did capture.

 

You'd been mentioning the arboretum during our phone calls, and on my last few visits.  What could you be talking about, where might it be?  An arboretum, right there in the city?  You said we went to it years ago, as Girl Scouts, when you were a troop leader. The woman from our town who took us there pointed out the spring wild flowers.  Trilliums.  I didn't even know you knew what they were.  I had recently discovered them, through a garden excursion with my own local arboretum. And thought I was fancy for learning what you had long known.

But the arboretum.  Through the genius of google, I found it, right where you said it would be.  And I asked you if you wanted to go see it.  Yes.

We stopped by the woods on a sunny autumn afternoon.  The parking lot was empty.  I got your wheelchair out of the trunk and should have known right away I was attempting something that wasn't sensible, something too difficult, something downright dangerous.  The handicapped parking spot was the only thing about the arboretum that was accessible.  Between the parking lot and the arboretum path there was a step - a small step, to be sure, but still a step.  I didn't notice then how the pavement sloped a little downwards there, too.  Nevertheless, you wanted, and I wanted for you.

I placed the wheelchair on the path, and helped you manage the few paces from the car to the chair - including that small step down.  Not bad.  The path itself was gravel - not great, but I managed.  We rolled back and forth only a short distance, as the path quickly sloped downwards at either end. As stupid as I was that day, I wasn't stupid enough to push you in a wheelchair downhill on a gravel path.

We admired what trees we could see, read what signs and markers there were to be read, and then returned to the path entrance.  And the little step, and that - oh, now I see it - sloping pavement.  How in the world am I going to get you back into the safety of the car?

I brought the chair close to the step and locked the wheels, and helped you stand up.  But that easy step up for me, from the level surface to the mildly sloping pavement, was for you a step onto a looming incline - you, with your weak legs, poor balance, and no handrails in sight.  "I'm going to fall, I'm going to fall!" you cried out.

"No, no, you aren't!"  I wrapped you in my arms and by sheer will alone I held you up.  By all the laws of physics you should have been lying on the rough asphalt with a broken hip, autumn leaves plastered to a bloodied skull.  Those are the images that flashed through my terrified brain as I steadied you, calmed you, helped you move slowly to the safety of the car just those few paces away. "How did she die?" someone murmurs at the funeral home.  "Oh, it was the daughter's fault.  Knocked her down on some godforsaken parking lot pavement and bashed her skull in." But you did not die, and we both live to drive off for dinner with your sister.

While I held you and did not drop you, and vivid images of your death flashed in my mind, this also came to me.  There is a story of my infancy you have told me over and over and over again.  How, as a baby, I was colicky, and you walked the floors with me every night, trying to soothe and calm me.  How one night, holding me so long and so late, rocking back and forth from one foot to the other, so tired from all your labors of the day, you fell asleep standing up.  You woke up just in time to catch yourself from dropping me on the floor and falling on top of me.  I am certain, from the sheer number of retellings of this tale throughout my lifetime and the way you tell it, that images of my bashed and bloodied baby skull on the kitchen floor must have flashed through your terrified brain.

I want to give you all that will make you happy, just as you did for me, but my first job is to keep you safe, just as yours was for me.  I am not an overworked, sleep-deprived mother.  I should have known better than to try something crazy like an arboretum outing, and all on my own, too.  No one gave me a manual for this.

My arboretum's paths are paved. I could wheel you around the whole of it.  But you are not here. And it is not the one you remember, with the trilliums, when you were a Girl Scout leader, when your legs were strong, when I was a girl, when life stretched long before you, when a step was just something you stepped lightly over on your way to something else.

5 responses so far

Chocolate Yogurt, Balm of My Soul

The universe has seen fit to kindly offer some recompense for years of suffering. I thought it best to take public notice. You want to reinforce good behavior on the part of the universe, in the hopes that it might continue down that path.

There were many years after my stroke when my diet was extremely limited. Everything, it seemed, was a migraine trigger. Not just little headaches, mind you, but crushing migraines that left me bed-ridden for days. My migraine-enforced food deprivations included two of my favorite foods: yogurt, and anything chocolate.

Years of botox treatments seemed to have a gradual desensitizing effect on my food triggers, and eventually I could eat a large chunk of the richest chocolate with impunity.

And then I discovered that my favorite local yogurt-maker makes chocolate yogurt. Yes. And it is too wonderful to be true. Except it is.

I rationalized: there is virtue in indulging in my hi cal treat. Yogurt is good for you! Locavore! Eat healthy AND save the planet! But really, delicious chocolate yogurt is just something the universe owes me. The universe rarely gets around to coughing up much of anything it owes me (or anyone), so three cheers for tasty chocolate yogurt. I have a quart of it in my refrigerator right now.

My wish for all the Zuskateers: may you be granted your own chocolate yogurt-equivalent today.

3 responses so far

Defining the Discourse and Words We Use: Who Gets To?

So, this is not the way I imagined breaking my writer's block. Or my refraining-from-writing-as-an-act-of-mourning. Or my mourning-induced aphasia. Or whatever is this is. I'm gonna just cross my fingers and hope I don't snap during the writing of this and say something that worsens everyone's depression (except mine) and destroys the universe (because of my omnipotent evil feminazi womanish powers)  which in any case should be ignored (really, the whole post should be ignored, on account of its having been written by a screeching harridan whining about no big deal).  Here we go.

First, I ask thee, gentle Zuskateers, to read Let Me Fix That For You, Nature at Red Ink. (Thanks, @rocza for that link via the twitters.)  Then please read I'm sorry...but you brought this on yourself honey by my dear friend Drugmonkey.

In the first post, Henry Gee's original letter is a discourse-controlling tour-de-force, and Red Ink does a marvelous job of deconstructing his blatherings. One just sits in one's chair, jaw agape at the hilariously depressingly superb job that is this pulling of the truth out of truthiness's ass. It both entertains and instructs. One gets a delightful dose of schadenfreude in the reading of it, whilst simultaneous schooled by the unmasking of rhetorical tricks Gee deploys .

Next up is Drugmonkey's blog piece, offering a detailed analysis of  Gee's nonpologetic discourse. Wait for it... comment #4 tells us how he is doing itt rong, and in an inflammatory manner, and how the rong is ineffective to boot. Trifecta of discourse control!

Commenter #4's knickers got bunched over all the rong because (a) Drugmonkey used an analogy - ineffective! and (b) Drugmonkey picked a bad analogy - inflammatory!  Drugmonkey might as well be talking to a brick wall. Or worse, trying to talk to someone on the other side of the brick wall but all his shouting for attention makes them climb up the wall and shove some bricks onto his head to shut him up.

I'm sorry. I know that was confusing and possibly inflammatory. The person atop the wall could have poured boiling oil on his head. Or shot him with flaming arrows.

Now, as Drugmonkey did, we pause here for a trigger warning regarding abuse, should you read further.

Continue Reading »

13 responses so far

Give Us This Day Our Daily Meds

Nov 19 2013 Published by under Geekalicious, Making Disability Visible

Med Art

Daily Meds as Medi-Art

 

Not inclusive of meds "taken as needed" for migraine! Or the PPI, every other day-ish. I wish I could call mom and tell her I'm catching up to her all-time impressive total.** Winning! Winning!

 

**We did manage to get it re-evaluated and whittled down to a more reasonable number.

3 responses so far

Why I Won't Be Registering For ScienceOnline Together 2014

Nov 14 2013 Published by under Isn't It Ironic?, Making Disability Visible

ETA 11/18/13: As Karen Traphagen points out in the comments below, the session on Broadening the participation of the disability community in online science is indeed included in the schedule for ScienceOnline Together 2014. I was wrong to imply it was not, simply because I had not located it in the schedule, and I thank Karen for pointing this out. I am glad to know this session will be included in the conference. My point about the registration procedure and the issues it creates for people with disabilities - or for people with caregiver responsibilities that can't be shirked at the one particular registration time, or anyone else who has to be in a meeting or a class or on the job or attending to any other responsibility at all - still holds. If registration is a scarce and limited commodity, then the current allocation system is, in my opinion, heavily weighted in favor of people with certain types of advantage, like excellent internet access, free time, flexible schedules, good health, and no major caregiving responsibilities, among others. Except for the 75 consolation spots, of course. Good luck!

The ScienceOnline Together 2014 registration for 200 spots opens today at 3 pm EST.  I've been lucky - and I do mean lucky -  to attend all the past annual incarnations of this event. The first time it helped to be part of the small group of people who knew about it and who encouraged me to go to it. Later it helped to have enough spare time and reasonably good health to participate in session organization, and money to afford registration, travel, and lodging. Most recently it helped to be literally lucky enough to win one of a few lottery spots.

It looks like lots of good sessions  were proposed this year including one called Broadening participation of the disability community in online science.That one doesn't seem to have made it into the schedule, although I'm not sure about the relationship between sessions and schedule.  I haven't exactly been keeping up on the details of conference proposals and organization, in large part because of my chronic migraines.

Speaking of the migraines, today at 3 pm EST I will be in my neurologist's office. He will be giving me a botox treatment for the migraines, something he does once every three months. During the treatment I will be wincing and mildly cursing from the pain of the needles, and hoping for better results than the two previous treatments. One thing I will not be doing during the treatment is asking my doc to hold the needles for a few minutes while I whip out my iPad, borrow the hospital's wifi, log into ScienceOnline Together 2014, and attempt online registration.

It looks like I, along with the session on Broadening the participation of the disability community in online science, will be absent from ScienceOnline Together 2014.

What's that you say? There's a lottery for 75 spots after the real registration, just for sick/loser folk such as myself? Why that is awfully kind and generous.

If we are not to discuss how to Broaden the Participation of the Disability Community in Online Science, we might at least facilitate their participation in Online Science Unconferences by not requiring them to hover anxiously over their computers at a one specific time to compete for the scarce commodity of registration spots. In fact, we might Broaden the Participation of Just About Damn Near Everybody if ALL the available spots were in a lottery, and everyone who wanted to go to the conference had to sign up for the lottery. Then people who were privileged with better online access, more free time, and luxurious good health wouldn't have the upper hand.

Do you want a 2:1 ratio of professionals to students? Put the professionals and students in different lottery pools, and split up the spots in the appropriate ratio. I think that might be fair, to help boost the student representation; they might tend to under-register, and professionals to over-register, in the lottery pool. Do you want 50:50 gender balance? Within your lottery pools, first select one person randomly from the male and then one from the female candidate pools. Do  you want a diverse racial/ethnic representation? If you collect this information on the lottery registration, then use the results to weight your selections. What, this isn't a fair lottery anymore? My dear friends, the current state of affairs is already Unfair.

Having money, being relatively healthy, knowing the right people combined to help me access the conference in the past. Being white and straight is, we can be sure, helpful in knowing the right people. It's my shame that my luck in years past obscured the unfairness inherent in this (and other) conference registration situations. But that's what privilege does for you. It helps you not see what will inconvenience you. Dismantling some of that privilege might have made it less likely that I would get to go to all of those conferences. So perhaps it's just as well that I sit at home in 2014.

 

3 responses so far

Older posts »