Out of countless interviewers I met with for jobs ranging from hotel night desk receptionist to art store clerk to office assistant, only a few had the nerve to directly refer to my physical difference. The first didn’t ask so much as tell a story about a previous employee with a back injury who had become terribly unpleasant and grown increasingly unreliable as his condition had worsened. He was visibly upset by this memory, and so I consoled him: It felt like what he was asking me for. It wasn’t the first time someone had asked me to make amends for their experience with a different disabled person. After the interview, I said goodbye and walked out of the room smiling a tight and silent smile though inwardly I was ready to punch holes in the sky.
The second person to address my disability was a young woman who handled hiring for a mid-sized bank. I had applied for a full-time job in the wire transfer room, a job that was not at all physically demanding and one that I had briefly done at the same bank as a temp. My boss from that job had recommended me for the position. After a pleasant conversation, the young woman looked me square in the eyes and said, “We will never be able to offer you a full-time job with our current health insurance provider because of your medical condition.” No one had ever been so honest with me.
As a young adult, I limped confidently into countless job interviews armed with the unshakable belief that I could do the work. My disability—a chronic condition wherein my immune system mistakes the cartilage in my joints for something evil and proceeds to rip it to shreds, leaving my limbs weak and somewhat twisted—has been with me since early childhood, and I found it difficult to imagine life without it. When job-hunting, at first I saw my bodily difference as a potential asset, because of how it has turned my mind toward creativity, improvisation, and problem-solving with whatever tools I have at hand. Each day for me is a kind of logistics puzzle: Will my arms and legs move as they did yesterday? Will I have the same level of energy? If not, how will I compensate? I have learned to work efficiently within unpredictable and uncontrollable parameters.
But these strengths were nowhere near as apparent in a job interview as was my handshake, a delicate and strangely angled thing that I imagine makes some people feel as though they are shaking hands with a decorative twig arrangement. Mine is a handshake that screams “POTENTIAL FOR SKYROCKETING HEALTH INSURANCE COSTS!” to any HR person.
In my twenties, I got by with a series of spotty part-time, under-the-table jobs that mostly ended in the suffix -sitter , as well as by the good graces of my parents, who were able to pay for my health insurance and help out with money for living expenses from time to time. My family is one of those fortunate, economically stable ones that possesses the cultivated expectation that each generation will do as well as or better than the last—because, until I came along, that line of thinking had been justified. But my family’s wealth is not unlimited, and I was not brought up to be comfortable with the idea of relying on my parents indefinitely. I wanted them to reach their retirement knowing that I was self-sufficient, knowing they didn’t have to worry about me.
As my twenties ticked by, this desire to spare them worry morphed into a crushing and useless guilt. I tried to bury this guilt beneath increasingly frantic stabs at employment and aggressive shows of outward optimism. I felt like I was repeatedly banging my head into a brick wall while my non-disabled friends were somehow finding doors. I knew this was what I was supposed to be doing, so I kept going, forehead purple and hemorrhaging, a smiling mask super-glued in place.
With almost refreshing honesty, during our brief conversation the HR woman at the bank shifted my focus from inward to external. In a society that places responsibility for health care in the hands of employers, I realized, I wouldn’t have wanted to hire me, either—certainly not for an entry-level job. My body looks expensive. In our society, in which health care is treated like a consumer good, my body is expensive.
One in five people in the United States lives with a disability. When I first encountered this number, I thought it had to be incorrect. How could so many of us belong to an invisible group? We don’t appear to be anywhere. We aren’t seen in the streets, we aren’t noticed out shopping, we aren’t portrayed in media, we aren’t hired for work. If we are 20 percent of the population, where the hell are we?
Of course we are everywhere. We are frequently alone, often the only members of our families to belong to this group. We are every age. We are every color; we come from every income level; we have every immigration status; we are men, women, and every other variety of gender on or off of the spectrum. We are straight and every conceivable letter of LGBTQ+. We are progressives, conservatives, and politically indifferent. We live in cities and in remote wildernesses. We are one-fifth of the population. We are everywhere, so why aren’t we seen?
We aren’t seen because in a capitalist society, visibility is tied to employment and income. The unemployment rate of people with disabilities fluctuates between 70 and 80 percent in the US. Since access to employment increases if you look like someone with low health insurance costs, people with visible disabilities are often made invisible.
Walking into the social security office just months shy of my thirtieth birthday in 2008 almost felt like a criminal act. Clearly this safety net was meant for folks with more significant obstacles—never mind that I had become accustomed to eating one meal a day and getting splitting stress headaches the week before each small rent check came due. That I might be unemployable seemed like a profound waste. I was positive the bureaucrats would take one look and turn me away. In the waiting room, my eyes darted from the rows of plastic chairs to the bulletproof glass that separated us from them.
I imagined scorn, perhaps pitchforks and torches. What I found was affable helpfulness paired with a detailed enumeration of specific regulations. After double-checking my forms and reviewing my financial documents, a young man with the disheveled look of a recent college graduate born anew as a low-level servant of the public looked at me and said, “Wow, you totally qualify. Why didn’t you come to us sooner?”
I could have given him a million answers. Instead I fixed my eyes on a spot on the linoleum floor where a dust bunny was feebly flopping in the breeze from an air vent, and, without looking up, muttered that I didn’t know. Then I moved back into my parents’ house to wait out the year it took to get approved.
I qualified for social security under the category of “adult disabled child”—in essence, I would be drawing my benefits against the taxes that my recently retired father had paid into the system while he was working. This would cover my health insurance, as well as a monthly stipend that was just a few hundred dollars shy of the average rent on a studio apartment in Los Angeles County.
In order to qualify, I could not have more than two thousand dollars worth of assets (not a problem), and needed to have a physical exam administered by a social-security-approved doctor. Upon approval, I would automatically lose my benefits if I ever (1) earned more than a certain amount per month (as of 2017, that amount is $1,170) before taxes, for more than nine nonconsecutive months in any given five-year period; or (2) accrued more than $2000 worth of assets at any time; or (3) got married.
I know these rules, designed in the early 1950s, exist to keep people from taking advantage of the system. I know the aim is to do the most good for a vast legion of individuals with an array of complex needs. At the same time, within these rules I find there is very little room for any kind of adult life. There is no space to progress beyond the suspended-animation existence of a perpetual adolescent.
The level of income provided is low to the point that I have no idea how others afford rent. It is only my parents’ privilege and willingness to have me in their house that enables me to live with a roof over my head. I have yet to annoy them to the point of eviction and it seems unlikely that I will, but with no ability to save comes no ability to plan for the future. I have no idea what will happen to me when my parents are gone.
“Adult disabled child,” then, is an apt name for this program. We who use it are discouraged by its structure from attaining or planning for independence. The rule on marriage is especially cruel—I have always been a sort of romantic magnet for dudes even more ill-suited to society than myself. Even so, I am perpetually hope-drunk when confronted with a sparkly-eyed stranger. Living under this system means that every swipe right, every walk into a first date, is made with the devil of economic insecurity firmly perched on my shoulder, whispering low pragmatic curses of doom.
At the tail end of the second Bush administration, a few years before the Affordable Care Act sought to prohibit discrimination against people with preexisting conditions, social security was my only option. The health insurance I have thanks to it is as good as, maybe better than the 1980s-businessman-dad benefits I grew up with. Given the daily medication I require to function and the fact that I will need surgeries throughout my life to maintain my ability to walk, I had to make use of this system.
Being born in the late seventies and becoming disabled by the early eighties gave me a front-row seat to astonishing social progress. I was educated in my local public school because of the Education for All Handicapped Children Act, passed three years before I was born and now renamed the Individuals with Disabilities Education Act. At ten years old, I witnessed the passage of the Americans with Disabilities Act. Both of these laws were driven by fierce activism from within the disability community; I have lived my whole life on the cusp of a revolution in how our country recognizes the humanity of people with disabilities. Still, this inadequate progress has been late in coming. Among people with disabilities, I have benefited more from these shifts than most due to the privileged position of my family. Even so, I am sidelined.
The passage of the Affordable Care Act in 2010 filled me with the same chills I experienced at the passage of the ADA. The law opened the world to me to such a degree that the sudden rush of freedom felt like vertigo. Finally, here was my door. With its guarantee of nondiscrimination based on preexisting conditions and its promised cap on what insurers could charge, perhaps self-sufficiency—that tantalizing, all-important goal I’d once had—was actually within my reach.
The ACA meant I could throw myself into meaningful work knowing that if I managed to make too much money to qualify for social security, I would be able to buy health insurance on the open market for a reasonable price. For the last six years, that is what I have done. I still depend on social security, I still live with my parents, but each year the work is a bit steadier and I can embrace new opportunities with confidence. Under the protections of the ACA, I have been building a writing career, publishing essays and short stories and working on a novel. This summer will be my second working on staff of a writing workshop in France. I am acquiring the skills, experience, and connections I need to pursue independence. In a small segment of the world, I have become visible.
The ACA, imperfect though it is, made space in our culture for people with disabilities, people like me, to live more fully engaged and fulfilling human lives. It allowed me to create a less bleak future for myself. The proposed Republican replacement plan, while it keeps the preexisting conditions clause, would be much worse for people with disabilities. It would allow insurers to offer plans that don’t cover hospitalizations. As a writer with inconsistent health, such plans may be the only options in my price range if I meet my goal and manage to work my way out of the social security system. Yet I know that I will need surgeries, and these surgeries will require hospitalizations. Medicaid—the program used by many disabled and poor people—will also shrink significantly under the Republican plan. It’s difficult to see a viable option other than to work less; to once again disappear.
Many who lose their access to healthcare will not survive the loss. We can build on the existing law, but it will take work, and we must demand that our lawmakers represent us in this work. We must recognize that this is a conversation about human rights. We must acknowledge our responsibility for one another.
I know I have lived my life thus far as part of the first generation of Americans with disabilities who were not simply thrown away outright. Many of us were educated and raised to participate in our society. We have joined and strengthened an already vast and storied movement, writing, speaking, and showing up for ourselves. We are one-fifth of the population. We have always been here. And we are not going away.