Disability: An Intersection of Privilege and Pain

[Content Note: Surgery, Pain, Infertility, Privilege]

Ana's Note: This would normally be a Twilight day, but I wanted to take some time to talk about my 5/29 surgery in a couple of rambly posts.

I am a disabled person. I have a worse-than-average spine, a great deal of pain as part of my daily lifestyle of walking-sitting-standing-breathing, and I go to hospitals for lengthy invasive surgical techniques every decade or two in order to glom some more metal bits on to my spine. I am sitting at my computer in a back brace as I write this post, hoping that I can get to the end of the post before my medication kicks in and renders me unconscious for another 4+ hours, as it has thrice daily since I came home from the hospital with a goody bag of pills. (I cannot tell you what a kink this has put in my productivity.)

Every sentence I write has three or more squiggly underlined words in Firefox because my fingers can't seem to remember how to type the way they used to, probably as another side-effect of the narcotics. This morning I woke up my husband from his much-needed sleep in a groggy panic because I was so stiff I could barely breathe and I was worried that if I didn't get up and move around in order to warm my muscles up -- a feat I can only accomplish with a great deal of help on his part -- I might become seriously sick or injured. (They give you breathing exercises in the hospital because if you hold still for too long after surgery, fluid collects in your lungs and you get pneumonia.)

I am also, however, an utterly privileged person. My yearly income is more than the average American's, and my husband's yearly income is more still. My father's yearly income is even higher, and since I am his only child, he's always ready and willing to pitch in and help pay for medical necessities. We all three of us work at jobs that offer health insurance that isn't very good but is admittedly much better than nothing. My husband is strong, able-bodied, willing to help me in whatever way he can, and has decades of experience from raising a child with severe cerebral palsy: he knows a great deal about the ins and outs of taking care of someone who cannot individually perform such basic functions as "get out of bed" and "dress oneself".

A while back -- I think it was during the Harry Potter e-Book thread discussion -- the question was raised as to whether or not eReaders could really be considered "disability access" devices since they're relatively expensive and not available to the general public. But the problem is -- and this is something that most non-disabled people genuinely don't realize -- is that all disability access devices are expensive, either in monetary cost or in terms of social debt.

Months before my surgery, I started jotting down notes for a post that was going to be called "Costs of Disability". I was going to outline the incredible expense of buying the most expensive (by approximately 2 grand) recumbent bike in town, merely because the top-of-the-line model featured a mesh back instead of a hard plastic one, and the mesh back didn't press painfully into my hunchback in the same way that the plastic ones did. I was going to talk about the yearly cost of a gym membership so that I might exercise at a pool -- one of the few exercises I can do safely and without pain -- when, in contrast, my able-bodied neighbor can exercise for free by walking around our neighborhood.

I was going to outline the costs of buying eReaders for every occasion -- large LCD ones for colored comic books, smaller eInk ones for on-the-go-reading, glow-in-the-dark eInk ones for reading in bed after Husband has gone to sleep simply because it's physically impossible for me to lean up and reach the lamp to turn it off without his help. I was planning to break down the costs of buying all books "new" as e-books as opposed to used prices at the swap stores that Husband loves to visit and where the poundage of a book simply isn't something he has to weigh (haha) when considering it for purchase.

There were daily costs I wanted to talk about; things that surprise most people when I disclose them. Shoe insets and/or custom-made soles to bridge the 2-inch leg-length discrepancy between my legs which causes dangerous spinal pressure on my fused vertebrae. Wheelie backpacks to get my laptop and lunch food to my work desk on the second floor. Lighter (and therefore more expensive) laptops so that I can email and blog from the couch or the bedroom and not stay uncomfortably glued to the desktop computer all day long. 

Weeks before my surgery, new items were added to the list. Shoes that could be velcro'd into place, since I wouldn't be able to bend over long enough to tie laces. Larger sizes of socks and underwear because my body would swell up in a defensive water-retaining response to the surgery. New shirts; loose ones that could slip over the head without much raising of the arms or (ideally) that buttoned up the front. New shorts with soft waistbands that wouldn't pinch or fit tightly. New nightgowns that wouldn't bundle up or cling tightly to my incision. Handicap car placards that cost nominal processing fees.

After my surgery, more things had to be gotten. Specialized grabbers for picking things off the floor when I drop them. Cooking tongs for holding toilet paper at the right angle. Bed side rails so that I can lift myself out of bed without the help of another person. Toilet side rails so that I can get up from the bathroom without slipping and falling. Shower chairs and the specialized shower spray heads that allow for the use of them. And, of course, the walker and the back brace which were -- thankfully -- supplied by the hospital.

And none of this gets into the surgical costs themselves. The 10 grand for the vasectomy reversal on Husband that didn't work. The 20 grand for two consecutive in vitro fertilization attempts that failed to produce anything except dozens of arrested development embryos. The 30 grand for the spinal fusion surgery and gods-know-how-much for the seven-night stay in the hospital. The prescriptions, which I couldn't even begin to total up at this point, but are probably somewhere in the 5 grand range. (Funnily enough, the hormone stimulator medications cost more -- much more -- than the pain relieving ones. I didn't expect that.)

Some of this the insurance will pay for; some it will not.

Then there's the personalized care. There's my husband, lowering me carefully into bed via the "baptism" method (one hand clasped down on my shoulder, the other bringing up my legs in a fluid motion) that keeps my spine a safe, rigid line throughout the entire process. There he is again, gently clasping his arms around my neck to lift me up and forward so that I can get out of bed in the morning. There he was, the first night after they removed my catheter in the hospital, patiently taking me to the bathroom once an hour, never bemoaning his lost sleep or complaining that our marriage vows hadn't explicitly called out "ass wiping" as a husbandly duty.

All these "costs" of having disabilities are things that I've known for awhile that I need to talk about. I feel very strongly that this post needs to exist, just because it's so easy for these costs to seem invisible to able-bodied people. But the thing is, I've been dreading writing this post. I don't want to write this post. Because no matter how much this post wants to be about the costs of disabilities and how we as a society need to be aware of those costs and not pretend they don't exist, the more I write and the more these things total up, the more the post really becomes about how I happen to be one of the rare, privileged few who can afford these costs. And so this post becomes less "The Costs of Disability" and more "The Payment of Disability", which is so very much another thing entirely.

Because we can talk about finances and education and savings and planning and careful application for medical grants and insurance coverage until the cows come home, but that won't change the fact that I have a bieberbillion megaton of privilege despite all my disabilities. And we can argue over starting points and class in America and difficulty settings in video games and whether or not I carved every millimeter of my relative privilege from harsh, unyielding social strata with nothing more than my razor-sharp wits, unrelenting determination, and my poor, bloodied, bare hands, but none of that will change the fact that like-it-or-not, deserve-it-or-not, I have privilege

And I feel ashamed about that.

A part of me realizes, intellectually, that privilege is almost a prerequisite for effective advocacy. In 2009, Kate Harding and Marianne Kirby wrote in "Lessons from the Fat-O-Sphere" that:

Sad but true: Most of the people we see writing confidently and persuasively about body acceptance in general and fat acceptance specifically are married or in solid long-term relationships. There aren't nearly as many single people doing this, as far as we can tell. And that is kind of heartbreaking, because we suspect that it is no mere coincidence.

Kate and Marianne were pointing out that it is easier, so much easier, to write about self-confidence and healthy body images and feeling beautiful in the socially-unacceptable skin you live in when there's someone in your life telling you those things on a daily basis. Or even just implying those things by being there in a steady relationship.

And it's true: privilege makes it easier to write about marginalization. Fat Acceptance advocacy is easier when paired with romantic privilege. Disability advocacy is easier when paired with financial privilege. Feminist advocacy is easier when paired with the privileges of education, of erudition, and of articulation.

Deep down inside, a tiny shameful part of me wants to pretend that privilege doesn't exist because it's faintly embarrassing. And I'm not the only one, surely. I can't be the only one who doesn't want to point out the elephant in the room that I can blog about disabilities and write books on feminism and engage in lengthy deconstructions about racism because I have wealth and education and privilege that -- whether I worked hard for it or not -- others still simply do not have. 

Let's say you scratched and you clawed and climbed the ladder of success. You never took a welfare check or charity, you worked three jobs to get through college. And at the end of it you look back on your labors and feel justified in saying, "I never got help from anybody."

So ... you were never a child? From birth, you were hunting and gathering your own food? You never had a mother to "hand" you milk?

You're completely self-educated? At age 4, you sought out your own knowledge, and paid teachers out of your own pocket?

I don't think you did. I'd have seen something about it on the news.

I think your parents poured untold resources into your hungry mouth. I think you had a roof over your head that was paid for by other people, I think you went to schools that were built and staffed and paid for by other people, I think you felt safe because the streets were patrolled by other people, I think you drove to your three jobs on roads paved by other people, in a car built by other people and burning oil that was drilled by other people in a nation whose borders were defended by other people.

[...] So when I say "We're all in this together," I'm not stating a philosophy. I'm stating a fact about the way human life works. No, you never asked for anything to be handed to you. You didn't have to, because billions of humans who lived and died before you had already created a lavish support system where the streets are all but paved with gold. Everyone reading this -- all of us living in a society advanced enough to have Internet access -- was born one inch away from the finish line, plopped here at birth, by other people.

I am a disabled person, complete with walker and back brace and narcotics prescriptions the likes of which could inspire a whole bevy of Beatles songs. I am a marginalized person, in the sense that I am fat and female and very frequently loud in a society that values none of those things, at least not in combination with one another. I am a female engineer in a career climate steeped in sexism, I am an infertile woman in a society that considers asking me when I'm finally going to have kids a perfectly normal social interaction, I am a wife in a world where it's considered appropriate for strangers to instruct me on how to interact with my husband.

None of these things are good things, or small things, or things to be brushed off as unimportant.

But I am also a privileged person. I have relative wealth and adequate health insurance, courtesy of a job that I was able to land thanks to copious amounts of education and networking accomplished with the aid of my parents. I have a tremendous social network in the form of my family, my husband, and my friends, largely through their own goodness and kindness and not so much through my own personal merits. I have literacy, education, and I have the kind of able-bodied health that allows me to sit at a computer and broadcast my thoughts at the world. I have privilege, and that privilege is not trivial.

There's no automatic shame in simply having privilege. I would venture to say that each and every person reading this post has some privilege, if only because they have the necessary internet access to read this post. You may not have very much privilege, and you may have been forced to fight and claw every inch of that privilege from the kyriarchy with your bare hands, but you still have it.

I absolutely do not expect anyone to apologize for having privilege. It's perfectly possible to have privilege, to be given privilege, or to be born into privilege in ways that they cannot control, cannot reverse, and needn't feel guilty for. But I do hope that everyone here can remember that they have privilege. It's a hard thing to remember, and not something pleasant to keep in mind -- believe me, I know. But I think it's something we need to remember if we're to navigate that privilege responsibly and without causing harm to others.

So here is your daily reminder: I have privilege.


JonathanPelikan said...

Stephen Colbert's new book, I am Privilege (and so can you!)

Ana, as usual, you're absolutely brilliant. We're not asking people to Stop Being Privileged or to Feel Bad For Your Privileges, just Keep In Mind That It Exists. I don't find it particularly shameful in and of itself, but then again, I'll guarantee you that's because of my birth and family circumstances blinding me a bit.

rrrrg. Apparently I literally cannot spell privilege in any form. Glad the spell-checker can actually figure this one out. I think my problem is I keep putting in the 'idge' sound I hear at the end of the world as priv-ledge.

Ana Mardoll said...

I spell it wrong almost every time, and I have a degree in English. It's just not an intuitive word for me. Thank goodness for Firefox. Oddly, I can get "marginalized" almost every time.

I love your reference to Stephen Colbert because that's pretty much spot-on what he's said in the past, I think.

And thank you. :)

Anthony Rosa said...

So, interestingly, I stumbled across an article about the history of the privilege terminology. Please tell me what you think, because you know a lot more about this stuff than I do.


chris the cynic said...

I've thought this was a great thing on the unnoticed privilege that comes with the "I got rich all on my own," stories every time I've seen it. Relevant part starts about 50 seconds in. Much shorter than the cracked thing though, not nearly as much detail. But God do I want that woman to be my president.


If I weren't born into a very accommodating middle class family I'd be out on the street right now. If I weren't in a place that, I think, offers not-crap resources to take care of its homeless population that might be a death sentence. I've very aware of my privilege.

Of course some of that is because it's cudgel to tell me that I've got it easy and mental problems are no excuse so I should just magically fix everything and be normal.

storiteller said...

The perspective that I am privileged is one that I am so very, very grateful my parents (especially my mom) taught me since I was little. My mom is a speech pathologist who works with many mentally handicapped children in an urban school. When I had the day off and she didn't, she'd bring me to school and I'd help out. With my own eyes, I'd see children my age who couldn't speak in full sentences (or at all), much less read. I'd see kids who got breakfast for free at school because it was more than their parents could afford to feed them. And I'd see children who were were damaged for life because of their parents' drug problems or who knew their parents wouldn't notice if they made it home from school or not. Then, to reinforce this message, my mom would come home with stories of kids she worked with in the past and present, including some awful stories of abuse. And no matter what, she would emphasize to me that I was not superior to these other kids because I had financial, mental, and social privileges they lacked. I always knew that I hadn't earned what I had as a kid - I was just lucky to be born into a very good situation that included very loving parents.

Like you, I frequently do feel guilty about it. After all, I've worked hard, but there's no amount of hard work in the world that could earn me the financial stability, health, and fulfilling relationships I have. But I believe that this privilege obligates me to speak out for people who have less and are more vulnerable than I am. With great power comes great responsibility and all that.

As for the cost of "disability access" devices, I find the idea of a e-reader being too expensive to be considered a disability access device kind of absurdly funny. My mom works with a number of kids who use Dynavox speech devices to communicate with others. This piece of hardware is staggeringly expensive - because it's so specialized, it can make an iPad seem like a bargain-basement device in comparison. Unfortunately, the school doesn't want to give the kids iPads to bring home, because they're afraid that their parents or others will steal them, leaving the kid without a communication device. (Not true in all cases, of course, but a high enough risk in some that I understand their fear there.) It's an unfortunate catch-22.

Also, you've helped me realize one reason someone might ride a recumbent bike. I was just commenting to someone today that I don't "get" recumbents as a cyclist, but I can see why they would be much better for someone with back problems.

Ana Mardoll said...

If you're asking my specific opinion about the article, I'm not sure I can give one. My current narcotics-fueled impression is that it's really long, seems kind of unfocused, and has a sort of theoretical distance that can be problematic in these discussions. (i.e., Can come across as treating this like a fascinating experiment rather than real peoples' lives.)

But, narcotics.

Do you have a specific question you'd like answered?

Mr Son said...

If you're okay with editorial comments from lurkers -- In the third paragraph it says "willing to pitch in and help pain for medical necessities". Is that supposed to say "help pay for"?

Thank you for all your writing, your posts can be very thought-provoking and/or entertaining. And now, I return to hiding shyly in the dark corners.

Laiima said...

I have a slightly different take on privilege than you do, Ana. In the world we have, if no one had privilege, none of these things like advocacy and deconstruction and whatever else *could* occur, because marginalized/oppressed people don't have the time, resources, and spoons to do that stuff.

I totally grant you that it's not fair that everyone doesn't start from equal opportunity, but I'm not sure how they could. If it wasn't kyriarchy, it would be something else. Evolution of all sorts is a lot like a lottery - almost everyone loses, one way or another.

I keep thinking I should write about privilege, but my thoughts are muddled, and don't seem to go anywhere useful.

SherryH said...

Interesting, and well said. There's a lot to think about here, and I feel like I should already know it, but it's good, sometimes, to be reminded. Thanks for this, Ana.

Makabit said...

I find the idea that romantic privilege enables people to do fat acceptance advocacy very interesting. There was a thread I read on a FA blog, the name of which I now cannot recall, where that came up. People were doing the usual "Well, I'm fat, and I've got it going on! Hot men and women throw themselves at my feet! It's great!" and a couple of women mentioned that it wasn't great for them. They were single, and didn't want to be, and had trouble finding partners because they were not a socially acceptable size. They wanted to accept themselves, but they also wanted to be accepted by others, specifically by romantic and sexual partners.

There was a certain amount, I thought, of pushback. A lot of chiding these ladies to get out there, and have confidence, and to some extent, discounting their experience. It's a complicated situation.

Anthony Rosa said...

Honestly, not so much. I didn't mean to make it seem like I wanted some thorough critique or something! I just found it an interesting article on the topic of privilege. Not one I'm showing to support some argument, just that it's interesting to hear what this person had to say, and so wanted to share.

You're right in that it did kind of feel distanced, but it was interesting. Or maybe I'm just used to reading incredibly dry academic papers, so it's comparatively lively. (Incredibly dry papers about film! Sometimes I'm amazed at how boring papers about films can be! Lol, one time I had to read this article about... oh what was it called... oh yes, "Toward a Non-Bourgeois Camera Style" by Brian Henderson. It's about the film Week End. Here's a link, if you feel like seeing what I mean. http://missingimage.com/files/mi/Henderson_Camera_Style.pdf I'm saying nothing for the quality of the ideas inside of it, mind. Just... my eyes kind of just glazed over.)

Ana Mardoll said...

There's so much intersectionality with the topic of privilege, and I find it just kinda fascinating to think about what constitutes privilege, what types of privilege do I have, how to deal with privilege, and how do we deconstruct society so that privilege ceases to exist? Is that even possible?

I think it's not possible to eliminate privilege entirely. Able-bodied privilege, for example, will exist until medicine becomes Star Trek levels of miraculous. Wealth privilege will exist unitl, well, again, Star Trek communism.

I think privilege is like liking problematic things: it's okay to have/do it, as long as you KNOW you have/are-doing it, and as long as you're willing to be cool about it when someone else points it out.

Ana Mardoll said...

I meant to say thank you for this, but things got wild and I forgot. Thank you.

Nenya said...

Aidan, thank you for your comment--from someone else whose parents couldn't help out with college. Thank you. It's really good to hear someone else talking about that. Movies and popular culture and admissions handbooks assume that all parents put their kids through school. (Mine would have loved to. They can't. Nope, sorry. Not even *that* much.) I ended up dropping out of college a year or two in (still tell myself I'll be able to scrape together the money to go back someday, but I don't know if I'm kidding myself)...but on the other hand, things didn't go horribly wrong when I came out as bi, even though my parents aren't too thrilled with it. Six of one, half a dozen of the other, I guess...

Completely agree about the privilege of having friends who make more money than you do and are willing to help out. I have so many opportunities that I wouldn't have if it weren't for my girlfriend taking me places or someone having an extra of something and passing it along or even people donating high-quality clothing to the Goodwill, which then sells them at prices I can afford.

Oddly, as far as access to social services or disability supports or charity or food stamps (all different things, all things I've used at some point), I've gotten to the point where if I successfully ask for help and get it, I feel proud of myself for damn well asking. Asking for assistance when I need it is a way of taking care of myself and taking responsibility for myself when I can't just do whatever-it-is on my own; sometimes it's pretty hard, on the ego or the energy reserves, but it is not a cop out.

And, you know, I'm white, that means a lot in this society. I'm literate, and from a family who valued reading and learning, and who loved me. I'm cisgendered. I pass for straight, even though I'm not. I'm one of the more socially-acceptable female shapes. I'm deaf as all fuck but there isn't anything wrong with my arms or legs. It's weird holding this tension between privileged and unprivileged. Hmm.

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