When You Can No Longer Consume, Conform, Reproduce, Obey. What “Disability” Means Under Capitalism & Patriarchy

“Consume, conform, reproduce, obey” is a reference to the 1988 American science fiction film “They Live” which suggests that subliminal and other cultural messages essentially program people to behave in certain ways which benefit the state and for-profit corporations.  Although the film was fictional, there is an excellent case to be made that it was also based on real life and the real experience of human beings existing under the brutal systems of capitalism and patriarchy.  Here, we are expected to conform to society’s rules with an alleged “greater good” prioritized over the needs of the individual; to obey the mandates of our elite corporate and public overlords created by them to benefit themselves at our expense; to reproduce if we are able and to seek medical assistance to conceive if we cannot; and of course to consume as many products and services as possible which generates income for the most wealthy and powerful among us.  Most able-bodied Western people do these things without thinking too deeply about them or they do it for as long as they physically and mentally can.  But what happens when, due to a serious chronic and debilitating illness or injury, we are no longer able to conform or obey because our illnesses direct our lives?  What happens when our ability to consume is hampered because we no longer have an income?

Here, in the face of serious and disabling illness or injury, the coercive reality of our station is writ large: the new role to which we will conform is that of a professional patient; we will consume medical goods and services whether we want to or not and whether they improve or further damage our health or not; and we will obey this mandate or, without means to supply ourselves with food, shelter or the necessities of life, we will be left to die.  This is the foundation and essence of the disability-based benefits structure and it is very real indeed.  As a seriously ill Crohn’s patient, this is my current (and likely future) station and I am furious about it.  Recognizing my immense vulnerability as a disabled person I am also saddened that it has come to this, horrified that I will be unable to stop it, and terrified for my future.

No longer able to “earn their keep” in a straightforward way by working, disabled people become forced to earn their right to live and to remain alive by making money for the capitalist patriarchal medical industry.  If you are disabled and cannot work anymore, or if you never could, in order to claim disability benefits to pay for rent, food, and the necessities of life you are required to submit to painful, stressful, dehumanizing and even dangerous medical testing and examinations; impersonal bureaucratic evaluations and determinations about your condition; and usually, to accept treatment.  How you feel about that and whether or not the medical interventions provide you, the patient, with any relief is irrelevant.

Clearly, moral and ethical issues arise where the treatment mostly or only benefits others like providers, researchers and drug makers and does not benefit the patient very much in comparison or at all.  In the case of incurable disabling conditions like Crohn’s disease, where the treatments often provide no relief and cause disabling side effects as bad as or worse than the original disease, the patient is placed in a troubling dilemma: submit to painful procedures, dangerous chemicals and risky surgeries not to heal yourself, but literally in order to pay the rent.  In other words, you have to let doctors hurt you for money.  Your new “job” is to be a pincushion, lab rat, and torture victim, and the proceeds of your “work” now largely go directly into the pockets of medical providers with relatively little going to you to spend as you wish, and none to spend on improving your life, health or station.  This is how disability benefits play out for everyone, but when the disease is incurable, or the pain and suffering intractable, forcing people who are compromised and in pain to engage in what may rightly be labeled self-harm or to submit to perpetual voluntary victimhood at the hands of the medical industry as a form of work and a survival strategy is beyond unconscionable.  It is frankly repellent.

For females living under patriarchy, the implications of this coercive benefits structure are even more sinister as girls and women are often particularly victimized by virtue of their sex, and that includes willful and benign neglect as well as sexual and other abuses suffered at the hands of misogynistic or male supremacist medical providers and patriarchal medicine as a whole.  Forcing females to submit to Western medical treatment in order to pay the rent places them at a unique disadvantage where their healthcare and other needs are not prioritized or recognized even on medicine’s — or the Court’s — best day.

When I was practicing benefits and anti-poverty law, most of my clients came to me in truly dire straits.  Many times, because we did not charge for consultations, the people sitting across from me had already received multiple consultations from other firms or legal nonprofits and gotten an answer they didn’t like.  It cost them nothing except their own time and transportation to visit yet another provider and hope, wish or pray for a real solution to their very real and very terrifying problems.  To be fair, most people I saw in my practice had complied and sought medical care or were willing to do so if it meant that they may eventually be eligible for benefits — most Western people seem willing to consume medical goods and services without complaint.  A complete absence of medical records was not usually the reason for their denials.  But what happens to people who, for example, are too sick or disabled to seek initial or ongoing medical care even if they wanted to; to those who had initially sought treatment but whose types or extent of injury or illness were not taken seriously by doctors/treatments were unsuccessful or otherwise discontinued; to those who object on moral, religious or other grounds to submit to a very specific type of care, namely capitalist patriarchal Western medical care; or to those who otherwise cannot or will not comply with their new, expected role as professional patient-for-pay?  Unfortunately, these people are left out in the cold.

In my case, I was willing to seek medical care in the beginning because I could feel my health and quality of life slipping away and I wanted to fix it.  I sought a diagnosis with the intention to follow through with beneficial treatments and hoped for a diagnosis with a known cure.  When I first received my Crohn’s diagnosis I was fully determined to “get better” but what I saw in my doctor’s eyes was chilling — she cryptically told me I needed to get insurance immediately, implying that this disease would ruin me financially and that if I couldn’t pay for the treatments I would be, in a word, screwed.  I heard what she was telling me which was that from now on I would likely be tied to the medical establishment for life and would always need treatment and would never get better and would probably get worse.  This is the definition of an incurable, progressive disease and Crohn’s is both.  Out of desperation I submitted to 2 years of painful and risky diagnostic testing, woefully ineffective treatment and suffered brutal side-effects of toxic medications that did virtually nothing to alleviate my suffering and in fact caused more.  When I saw that I was not getting better and that my ability to work would likely be compromised into the foreseeable future I asked my doctor to provide medical documentation of my disability in support of a Social Security Disability claim, but his experience with disability benefits and Crohn’s was that it is a tough row to hoe, and he was right.  Of course, a broken neck, multiple missing limbs or something more obviously and objectively disabling would make a more obvious case.  This is the level of bureaucratic fuckery chronically ill people have to deal with on top of everything else and it is physically and mentally exhausting.  The most seriously compromised patients are literally unable to comply.

When I saw what was happening to me, that I was getting even sicker despite taking the prescribed and accepted treatments, that I was unlikely to get disability benefits without my doctor’s enthusiastic support, and that this was the best I could hope for, or anytime soon, I took matters into my own hands.  I abandoned Western medicine and its inadequate and damaging Big Pharma voodoo and sought alternative treatment with medical cannabis.  I have found relief and healing which I consider a hard-won and unlikely personal success, but as an attorney myself, I know I have also destroyed any chance I may’ve had to claim disability benefits because disability benefits do not work that way.  I have both saved my own life — or at least my quality of life — and destroyed my own future and any chance to survive after my personal resources are gone.  I do not know exactly how this will play out, but the chances are 99.99% that it will not be good.  In my personal and professional judgment I predict that this will not end well at all.