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.