I am Not Political. I am Compassionate. A Take on Policy from a Disabled Person

I am disabled, officially. By the definition put forward by a private disability insurer and the adjudication rendered by the Social Security Administration, I am disabled. It is worth noting that my disability status is temporary. I am at present monitored on a three-year cycle to maintain my disability standing. Of course, three-year survival expectancy for the disease, which has garnered my disability approval, is around 5%, when reviewers come checking to see if I am still disabled in three years, there is a chance I will be deceased. Certain further “benefits” available to the “permanently” disabled, including discharge of public student loan debt and the ability to count my monthly disability payments as “income,” are withheld from my family given my “temporary” status. Again, temporary until death, the ultimate “permanent disability.”


You might want to respond that disability should not excuse me of debt that I entered into under sound mind and body. Repayment is my obligation. This would make sense were it not the case that if I return to work and earn income to pay toward my publicly held debt I risk loss of benefits status, in which case, followed to logical conclusions, your argument against my debt discharge is an argument against disability status, generally.


I have more on this. I become eligible for Medicare 24 months after date of disability. While you tune into nightly news coverage of the ACA, AHCA, repeal and replace debate, know that consequences are not only reserved for a theoretical abstraction, 24 million without coverage in a decade, but there are very real impacts to my healthcare coverage. If you need to put a face to those facing loss of coverage, [insert my face here]. I now have a pre-existing condition, so rolling back protections make me vulnerable to loss of coverage, if I were to shop the market. If you do not like the idea of government mandated, regulated, or provided healthcare, do you sincerely trust my life expectancy to the whims of the private sector boardroom?


My debt to income ratio is terrible because my disability payments do not “count” as income, given my temporary status; hence, Whitney and I cannot qualify for a mortgage. We are moving from my parents’ home to a rental next week. In under a year I have lost the ability to drive, lost the ability to work, we sold our condo to accommodate for our loss of income and my physical limitations navigating 16-steps to our second floor home. We have burdened my parents with moving our family of five into their single-family home. Thanks to the very generous donations of friends, family, and colleagues, we are in a position to manage our monthly budget, but we cannot be qualified for a mortgage and must pay rent, which is a monthly expense two hundred dollars more than mortgaging the same home. This is the first of many losses of opportunity because of our lower income. We do not have the money to earn home equity, and so the cycle of status quo continues.


My disability payments are just over half of salary I lost at time of disability, which is a big “pay cut,” if we call it that, but again, a hidden cost here is the inability to earn more; this inability manifests itself in two forms: first, I was on a fast-track at my previous employer to promote into higher positions and with them, increased compensation. I am not able to work those positions at that employer because of physical limitations and because it would disqualify my benefits status. Hence, my disability is not solely loss of salary, but loss of future earnings potential. Second, if I return to work at an even part-time status I risk loss of benefits, and if I earn more than federal poverty line my publicly held debt will not be discharged, even after three years. You know, if I live that long.


I benefit from government assistance, which I receive in monthly payments derived from an algorithm taking as input variables my years of employment, salary at time of disability, number of dependents, and amount I have paid into Federal Social Security programs during my time of employment. When you pay your taxes, you are, albeit indirectly and rather tenuously, also paying for the out of pocket expenses to which my family is accountable for securing my medication, office visits, imaging procedures to monitor disease progression, and so on.


Let’s put it this way, I am paid in disability payments from the government so that I may pay a private insurer to help pay for the drugs manufactured by a private company, who also pays lobbyists to influence the government to vote this way or that.


I am not political. I am compassionate. I am kind. I think love wins, I think women possess the right to choose, and this right should not be overturned. I think that the pursuit of life, liberty, and happiness, can only be realized if it is presupposed that happiness is contingent on protection of personal health and wellbeing. The mistake of the last thirty, forty, fifty years is to politicize those things such that my base line compassion is now somehow taken as a political stance.


I think I am entitled to the best treatment options, not because I am white and middle class and because I used to have a good job, before I didn’t, but because who doesn’t want to chip in a few bucks to help out a family like mine—and if you say that should not be legislated, I say, well, it should be, because there are a few assholes out there who answer my rhetorical question with, “nah, I’d rather not.” To that group of folks I say, join me at home when you open a medical bill for a surgery that costs $115,000, and if you don’t want to join me there, crying tears of relief that I have coverage, then join my wife at my graveside. At least she won’t have to pay back my student loans.

3 thoughts on “I am Not Political. I am Compassionate. A Take on Policy from a Disabled Person

  1. Very well written as usual, Adam. But so we’re clear: I’m not planning to attend your funeral. Please plan to attend mine. There will be Folgers crystals coffee and ice cream.

    Liked by 1 person

    1. Oh, Erin, the things I’m advanced planning for mine. We’re very similar, you and me, and whoever goes first, both celebrations will honor the joy of our lives. Btw, don’t forget the butterscotch for the ice cream.


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