If you can’t write, what rights do you really have?: Literacy and the exercising of personal rights

This past spring, I suffered a relatively minor medical emergency having to have emergency surgery to remove my appendix. I recovered quickly and without complication thanks to the excellent medical staff who attended to me 24 hours a day for a few days as well as my support system, including my wife who stayed with me constantly and my friends and colleagues who covered for and accommodated me while I was unable to go to work (and even brought me meals!).

After I had recovered, there was still the matter of the medical bills. If you’re not familiar with the way the United States’ healthcare system works, you might find it shocking that a recent study found that the fairly routine procedure I had (an appendectomy) can cost between $1,500 and $180,000. In addition, rather than receiving one bill from a single source, I have received bills from a variety of different places (for example, the hospital, the emergency room doctor, the surgeon, and the anesthesiologist).

I am fortunate enough to have health insurance (though note that many people in the United States are uninsured), and much of the well over $50,000 in medical bills were taken care of by the insurance company. The billing process, however, has given me quite a bit of opportunity to reflect on the role of reading and writing in my ability to protect my own rights and particularly to protect myself from accruing massive amounts of debt. I want to share some of my thoughts with you on how complex some of the literacy work I’ve had to do is and discuss how these literacy requirements can easily be expected to be a major barrier for those with less literacy privilege than I have.

I would estimate that I spend about a third of my day (if not more) reading and writing. I have a Bachelor’s degree in German and English and a Master’s degree in Linguistics and TESOL (I’m also working on my Ph.D). I read articles in scholarly journals employing such things as complex statistical models, and I even occasionally write for and publish in those same journals. It’s safe to say that I am highly literate, in a very narrow sense of the word “literate” (meaning I can read and write professional or academic texts). Yet, the complex language of insurance policies and billing statements are frequently difficult for me to decipher. I have largely prevailed by relying on the advice of my social support system and internet resources. I would argue my ability to use a computer and the internet competently also constitute a very important part of my literacy practices and that my access to a social support system that includes people who have had extensive experience with the law and with insurance companies is part of the privilege I enjoy as the member of a higher socioeconomic status.

In a system that was designed to protect me and my rights (and was thus just and fair), I might be able to trust that medical bills would be sent to my insurance company and processed by them without any type of intervention on my part. That is, I could just expect that the money I pay my insurance company would ensure that they would happily cover medical expenses, specifically those within the specified parameters of the policy that we agreed to in advance.

However, this is not so simple. In fact, my insurance company initially rejected my claim for the largest of the bills I received (from the hospital), forcing me to appeal their decision. Appealing their decision required a great deal of literacy work. After calling the insurance company and complaining, I was informed that I could appeal the decision. The appeal process required me to write a letter specifying the grounds for the appeal. Writing a letter may seem like a fairly straightforward, simplistic process, but I assure you that the literacy work required is much more complex than you might think.

First, I had to gather information relevant to my argument for appeal. This involved previous literacy work on my part to document in writing my past correspondence with the insurance company and with the hospital sending me the bill. Among the things I had to be aware of was my insurance company’s system for processing claims and assigning them and their decisions identification numbers as well as other documents that are not processed as claims (the insurance company had previously received my claim but did not process it because they did not have sufficient information). I had to know the details of my policy, and I had to be able to quote or refer to the relevant section that concerned my appeal. I had to do all of this in a way that presented me as a formidable enough legal threat, someone who possessed the literacy skills (and the associated socioeconomic status) to actually pursue the matter beyond a simple letter.

In addition, as the bills have flowed in, I’ve also had to dispute a debt that a collection agency claimed I owed. I did not know about this bill before the collection agency contacted me, and they contacted me long after the date of service (past when my insurance company would accept a claim). In addition, neither the collection agency nor the original provider could give me an itemized bill (a text type that I knew to ask for because of my past literacy work). Thus, I researched how to dispute a debt from a collector (including the Fair Debt Collection Practices Act) and then wrote a letter to dispute the debt. This letter was even more labor intensive, and I do not yet know whether it was successful. Below is a screenshot of the letter being composed to give you an impression of the literacy work that was involved in disputing these charges. I’ve modified it to hide some of the specific details (amount of the debt, identities of the other parties, etc.).

The final document had a Flesch-Kincaid readiability score of over 13, meaning it was appropriate for someone who could read at a college level. Of course my text is perhaps more complex than is really necessary in this case; I found sample letters online that were around 7th grade level. Minimally though, in order to defend myself from charges for medical procedures beyond those that I am obligated to pay, I have had to undertake complex literacy work and invest considerable time.

Protecting my rights has required minimally the following things:

• Approximately 3-4 hours of time to call the medical providers, the insurance company, and the collection agency (and inevitably wait on hold for quite some time); research what to do next; and then write a letter
• Access to a computer with printing capabilities
• Access to the internet
• Access to a phone to call my insurance company and the hospital
• Access to people ‘in the know’ (such as a friend who had previously worked in the insurance industry) who have been able to offer insight into how to proceed with my dilemmas
• Ability to search the internet effectively to read about my rights and how to proceed in writing letters to insurance companies and collection agencies (including finding sample letters that I could use as a template)
• Ability to read documents ranked by Flesch-Kincaid as above an 11th grade reading level (I estimated this by taking samples of texts from my insurance company and computing a readability score for them)
• Ability to write documents above a 7th grade reading level (I estimated this by finding sample letters to insurance companies and debt collection agencies and computing readability scores for them)
• Ability to take notes and keep records of my correspondences with the insurance company and others
• Knowledge of the postal system including how to send registered mail to document others’ receipt of my messages

I’m of course not writing about these skills to dazzle you with my literacy capabilities. Indeed, these things will seem fairly mundane to many of my readers. My point is that these practices were essential prerequisites to protecting me from rather large amounts of debt. Given that an appendectomy is a very common procedure that can happen regardless of your present state of health (indeed I am young and have no other health problems), it’s fair to assume this could reasonably happen to anyone. In addition, even though I played by ‘the rules’ and gave the hospital my insurance card when I first entered and also forwarded any bills I received to my insurance company immediately, I still had a need to do all of this literacy work due to the fact that often communication between the medical providers and my insurance company was fraught with problems, and I was in the middle of it. Both sides seemed perfectly willing to claim no responsibility in the matter and to leave the financial burden on my shoulders.

However, as someone with a great deal of literacy privilege, I was well-equipped to handle this situation. Many people are not. There are millions of people in the United States (and elsewhere) that for whatever reason cannot read and write in English well enough to perform these tasks, do not have access to (or the ability to use) a computer or the internet, or lack other relevant skills. Not coincidentally, these people are also usually the same people who are already economically disadvantaged in other ways, for example, by having been born into poverty. That means that, for people who are already likely to be economically disadvantaged, the specter of medical debt looms quite large in part because of the literacy work required simply to assert their rights.

I believe this has serious implications for how just or fair we might consider our societal institutions. If the ability to legally protect yourself against crippling debt requires the marshaling of skills that are not equally distributed in society and if those who lack the skills are also likely to be disproportionately harmed by the burden of medical debt, then we have to question to what extent our rights to protection from unfair debt are truly being granted or protected.

In addition, it is telling that adult literacy programs are among those programs that face ever larger cuts to their operating budgets. The very programs that might be able to provide help to those who lack the literacy skills I relied on are being threatened. In addition, the achievement gap separating reading abilities for children from low-income families and reading abilities for children from high-income families has grown over the past few decades. This suggests that our education system is helping to produce a generation that will have an even greater divide between those who will be able to defend their rights through literacy work and those who will not.