One month after I’m released from the rehab hospital, Sam proposes, and six months later, we get married. It feels like more than a good idea; it feels inevitable. Despite the fact that we spent the preceding five years of dating nearly breaking up every other month, I can’t imagine another way forward. Also, Sam recently started a full-time job. It comes with health benefits, and he can put me on his coverage if I’m his wife. I feel safe.
* * *
At the time, I didn’t think about our marriage in those terms—I will marry this person, even though we’re not terribly compatible and he kind of annoys me, because I want to have health coverage. When I reflect on it now, it’s difficult to untangle the messy mass of reasons that I married Sam, let alone how I made sense of it at the time. Sam’s love for me felt like a great fluke, a crack in the laws of the universe, and if I didn’t jump at the chance for romance, that would be it—poof! No love for you! I was terrified of the big wide world, and Sam felt so safe and steady. Maybe I confused relief for love, support for intimacy, security for compatibility? We’d been friends since we were eight years old, and between the two of us, we’d gathered a roaring bonfire of shared memories.
Almost a decade later, I have a difficult time looking squarely at these reasons. To be honest with you, I’m holding my breath as I type these words out, because I don’t like to look at them. I feel more regret, embarrassment, and shame about my decision to marry Sam than almost any other in my life. (Because, as you very well know, this marriage did not go well, and as you might have guessed, not only did I make a magnificent mess of everything on my way out of it, but I ended up hurting Sam in a big way.) It’s easy for me to slip into a dark spiral when I confront my willingness to use another person for my own sense of safety. I hate that I did that. I wish I could go back and redo it.
But there’s another voice in my head, too. She’s like the grandmother of us all and speaks from a place above the sloppy heap of guts and tears. (Maybe she’s the haggard one I saw in the mirror that night.) She reminds us: I made this decision as a young twenty-two-year-old. And perhaps more important, I was a young twenty-two-year-old trying my very best to stay alive without a clue how to do it. I didn’t have any practical support from a community that had navigated this path before, knew the roadblocks and bends, and could point me to wells and shaded areas.
This is one of the profound consequences of having an identity you don’t share with the living, breathing community around you—your family and friends, teachers and mentors. When you’re born into a marginalized community whose members share your identity, you are born into a family that understands and knows. They’ve been through the same things. They carry the insider knowledge, and they can help prepare you. (There are other complications and particular abuses attached to those who are born into a community with shared oppression, but collective insider knowledge seems to be a unique gift, as well.) People with disabilities are usually born into families that don’t share their disability or know anything about the world they live in. Family members can learn, but they’re starting from scratch. I didn’t know anyone who’d navigated their own adulthood from a disabled body, and I’d never seen it depicted meaningfully on a screen or a page. I’d never talked with a disabled woman about falling in love or how she chose her partner, didn’t know any inter-abled couple who could model or describe this part of their relationship, had never heard anything about programs that might have helped me find a job or get some health insurance. In my universe, this was the Wild West, and I was the only cowboy of my kind, trying to live on drips of water from a prickly cactus.
* * *
Soon after Sam and I marry, I reckon with a very harsh truth about myself: the instability of being uninsured, unemployed, and alone does not feel as overwhelming, incapacitating, or defeating as being partnered with the wrong person. I move out of our house six months after I moved in.
I say this now like it was an easy choice. It wasn’t. It was a time of turmoil, grief, anger, destruction, reckoning, and healing. It was scary and exciting, and in my desperation—for good or for bad—I did things I never imagined I could do.
In the middle of this catastrophic exit I accidentally learn a bit of insider knowledge: if you are disabled enough and poor enough in the United States, you qualify for monthly Social Security checks and Medicaid benefits. The very first I hear of this is from a disabled friend of a friend who comes home for a visit over fall break. Instead of catching up with my friend, I soak up every bit of information and solidarity I can glean from this real-life disabled woman who looks like me and moves like me and navigates the world with the same set of barriers I encounter every day. In my entire life, no one has told me about these programs—not my doctors or teachers or school counselors. How did this vital information fall through the cracks? Why didn’t they know?
Researchers at Cornell University looked at data gathered in 2017 and found that while about 65 percent of nondisabled people get their health insurance through their employers, 66 percent of disabled folks receive health coverage through Medicaid or Medicare. But qualifying for government healthcare is contingent on remaining poor. In other words, in order to have health insurance, a lot of disabled people are forced to choose between hovering near the poverty line or trying to find and survive a full-time job that accommodates their bodies and includes health benefits—a unicorn within the disabled community, where fewer than one in four people is employed full-time. With this setup, the relentless need for good health insurance can shape major life decisions for those who live in bodies that require regular medical care.
So after growing up with the fear that I’d surely die as soon as I became an adult, after making reckless, frantic decisions I thought would keep me safe, one of my worst fears about my future is abruptly quelled. I have no job, no experience or references or degrees to get a job, no bank accounts, no prospects, and still—I feel like I’ve won every prize. My Medicaid card pays for every appointment with every specialist, every medication I depend on, every test my doctors order. I breathe in freedom and exhale peace. I’m going to be okay.
The good news is that I’m so broke, I also qualify for subsidized housing set aside for folks sixty-three and older—and/or those with disabilities (that’s me!). I’ll never understand how it happened so fast, but a unit becomes available for me just a month after I put my name on the waiting list. I move into the ground floor, corner apartment in a building populated with people who remind me of my grandma and some of her crankiest friends. They watch from their third- and fourth-floor apartment windows to make sure I get home safely at night and berate anyone who dares to park in my spot by the back door. I get on food stamps and proudly purchase eggplant, cereal, soymilk, and eggs from the Aldi down the street. For a while, this tiny little world, measured out in monthly Social Security disability checks of $674, feels like my very own fairytale kingdom. I finish up my bachelor’s degree with help from vocational rehabilitation services, and the amount of my disability checks slowly decreases as I start to earn a bit of my own money. For years, I live well below the poverty line on a small stipend for teaching English classes while I make my way through graduate school. My world is small, but as long as I don’t move too suddenly in any direction, the waters remain still. I’m okay.
Surprise! Soon, it becomes more complicated. After a few years in graduate school, I take on a little part-time job working an additional five to eight hours a week at the center for teaching on campus. I want this job because it’s a great place to learn more about teaching, and I think it’ll be nice to have just a tad more money to buffer those stretches between checks. As soon as I take on this new, modestly paid position, however, my monthly income edges into ineligible-for-benefits territory. I start finding notices nearly every month that they’ve overpaid me—I actually owe money—so, I write checks every month to even out the balance. All the while, I keep a vigilant eye on my bank account. If I try to save any extra money, I run the ri
sk of crossing the line and losing benefits.
With the tiny bit of extra income, I decide I might be able to move into a little house with Bertie—a decade after our days playing flute together in the middle-school band, she still isn’t afraid to bump me down a flight of stairs or, apparently, go on a house-hunting quest with me. I’ve loved living with the senior citizen rat pack, but I also feel lonely. I live on an island where me and my sixty-three-and-older pals have 4 a.m. tea parties to watch royal weddings, but I also feel isolated from people my age. I try to work it out; I might be able to afford splitting the rent on a cheap house. If I can maintain the balance of earning a little more, affording a little more, and keeping my benefits? It’s a tightrope, hold-your-breath, no-sudden-moves, fingers-crossed fling at living my life.
As soon as I start looking for a different place to live, I realize I’m terrified of crossing state lines and losing my Medicaid benefits. I live right on the edge of Kansas bumping against Missouri, but all of the options on the Missouri side are attached to the risks of having to reapply, of waiting months for the paperwork to be processed, all the while with no coverage and no guarantee of support at the end of the process.
I want to speak with someone who can talk me through the best steps to take when moving and trying to cause as little disruption as possible to my Medicaid benefits. I’ve never steered my ship through these waters; I need someone to guide me. I don’t have a great history accessing this kind of information from Social Security, but I want to take my fate by the horns! Surely, there’s a better way—I just need to barrel through and make it to the other side.
I phone Social Security and wait on hold for more than an hour. When I finally hear a human voice, the woman on the line is immediately combative, even as she asks me simple questions like my name and Social Security number. She stops talking for minutes at a time without any explanation, and I wonder whether she is typing or has left for her lunch break. About ten minutes in, I realize I’m nauseous. My heart is pounding. About fifteen minutes in, I have yet to ask the question that’s prompted the call. I frantically draw flowers on my notepad. When we finally arrive at the moment—it’s time to ask the question, and hopefully get that coveted information!—I rush through the rehearsed inquiry. Is there any way to easily transfer my benefits from Kansas to Missouri? Is it more likely that I’ll be approved in Missouri, since I was approved in Kansas? She pauses. Then accuses me of having two identities. (Are you confused? Same.) She never even approximates an answer to my questions, but she does refuse to hang up the phone first, so I won’t be able to respond to the automated survey prompted at the end of every call.
To be fair, this is easily the worst phone call I’ve ever had with the Social Security Administration. Most of the people I speak with are polite, if pretty unhelpful. Like the woman who happily claims she is helping me sign up for a Working Healthy program; it’s only months later, on the phone with another Social Security employee, when I discover she most definitely signed me up for absolutely nothing. The vast majority of time I spend on the phone with Social Security is spent on hold, or with people who tell me the department I actually want to talk with is [name any other department here], or pressing numbers for different menus that always lead to dead ends with no human voices.
These conversations are surreal, and I carry them with me every time I consider picking up the phone, reaching out for guidance, or seeking information from Social Security. It’s interesting—isn’t it?—that the programs put in place to help disabled people afford to live in their bodies are so difficult to find, navigate, or understand, like an oasis surrounded by trap doors, snapping alligators, and guards shouting confusing accusations.
Eventually, Bertie and I find a place to live (another story for another chapter!), and I finish out my graduate degree, while teaching a couple of classes and working my part-time campus job. I continue to perform the delicate dance between not saving too much and affording rent, going after paid writing gigs and not earning too much. By the end of graduate school, I’m very proud—and very tired.
The little girl who grew up staring wide-eyed at her full-time working father leaves graduate school seeing herself as someone who might finally have something to contribute—something unique, important, and needed in the larger world. After being a student as long as they’ll possibly let me, I’m ready to go out into the world and finally start adulting. I try to conjure my perfect job into being. Something with writing and teaching and people and flexibility and joy and books and creativity and curiosity! I’m ready! But with every job I consider, I’m forced to review the life-or-death tightrope before me. I need to find a job that either earns a low enough salary that I can continue to receive Medicaid OR comes with excellent medical benefits. Very quickly, finding a job that matches my passions and personality doesn’t seem like the most pressing factor. First and foremost: I have to find a way to pay for this body of mine.
When I first see the job posting for a position teaching high school English at a small, independent school, I scroll past it. I hated high school myself, and not just because adolescence is painful. The pace itself exhausted me. I can’t picture myself thriving under that relentless speed. When would I write? When would I sleep? When would I pee?
After a month of searching for the unicorn job that would meet my tightrope requirements, I’m exhausted, anxious, and more convinced than ever that the job I want doesn’t exist. The high school teaching job pops up again, and I think, “Maybe I could swing it?” I love teaching, love writing, love talking about books, and love my teenage nieces and nephews. The salary is on the lower side for a Full-Time Adult Job (and this much education). It’s also three times more than I’ve ever, in my entire life, made in a year. And—drum roll, please!—it comes with some hearty health benefits.
When I take this job, my first Full-Time Adult Job ever, a feeling rises to the surface. Knowing that my hours of work are officially measured as “full time,” knowing that I’ll no longer need extra help from the government, knowing that I’ll be earning a salary makes me feel so much pride. I feel valuable, worthwhile, respectable, like I’ve finally earned a “1” next to my name—evidence that I bring more than I take. I’ve made it! This is the thing I thought I’d never be able to do, and I’m doing it!
Before this moment, I had no idea these ideals were lurking just beneath the surface. I didn’t know how good it would feel to fit into the standard (ableist) equation of worth: Hours + Production + Wages = Value. This equation is loud, powerful, and everywhere. Those of us who don’t work as many hours, who don’t “produce” as much (whatever that means), whose wages are lower, or (gasp!) rely on others to survive—we are categorized as a drain, a burden. This ableist model tells us that the human body is a work machine whose value is determined by its production—like a toaster that can toast six slices of bread instead of just the usual two. The more you do, the more hours of overtime you work, the less sleep you get, the more duties you fulfill, the faster you get the work done, the less help you require, the more you’re worth.
In the early twentieth century, those with physical disabilities received a “PH” (Physically Handicapped) stamp on their work records, not too unlike the zero placed next to my name during my summer as a camp “staffer.” To many employers a “PH” translated easily into “unemployable” or “not worth the trouble,” regardless of the job being offered or the precise manifestation of that ambiguous “PH.” So here we are, well into the twenty-first century, and how do we assert our inherent worth and value as disabled citizens of the world? So often, I see us try to play by the rules that weren’t made for us, try to fit, mask our needs, ignore our bodies, and push harder, harder, harder to prove that we have something to offer. We throw ourselves into the belly of the beast, the very force calling all of the most punishing shots.
Without actually having the tangible “PH” label attached to me, I still feel it as I start my new teaching job—sprinting, striving,
committing all of my brain and heart and soul and time and energy to being the Best Teacher Ever. But you guys, being a teacher is hard. A lot of full-time working gigs are hard, but this is what I’ve learned about teaching: it will consume anything you allow it to touch—every cell in your body, piece of your brain, corner of your heart, minute of your waking life. I forget to drink water or avoid drinking water so I won’t have to leave a class or a conference or a meeting or a good conversation with my co-workers to go to the bathroom. I stay at school late, take work home, grade all weekend, develop lesson plans in my sleep, forget how to talk about things that aren’t related to teaching, become a horrible partner, stop seeing my family, and forget I have a body.
The school cafeteria is located across the campus and always crowded unless you perfectly, precisely time when you get there. I dread the exercise of trying to balance a glass of water and a bowl of soup on the tray resting on my lap in front of my students while trying to make easy-breezy conversation with my colleagues every day. I don’t have the emotional space to face that challenge every twenty-four hours, so I start eating handfuls of almonds and protein bars at my desk in between classes. The school notices my absence from the cafeteria and expresses concern, but their attention feels like a reprimand. I hear that I’m making things complicated. They offer to send someone to bring me my lunch every day. I just want everything to settle, don’t want to alarm anyone, don’t want to make a thing out of this, so I agree for a few months. The most delightful man brings me Styrofoam containers of soup and grilled cheese, nachos, and mac and cheese every day, and we talk about the possibility of snow and his wife who makes warm winter hats and how excited we are for Friday, but eventually, the guilt takes over; I can’t ask this man to leave his post in the cafeteria and walk across campus (in the winter!) to bring me a meal every single day. And anyway, I’m never able to finish all the portions they bring me, and I don’t want to waste food day after day or leave our office smelling like enchiladas every afternoon. I go back to the almonds.
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