Why DIY Healthcare is a Dead End
A lot of discussion online surrounding how to liberate ourselves from the oppressive system of western healthcare discusses the use of DIY treatments. These do-it-yourself treatments allow for the self production and administration of medications outside of the mass production and control of pharmaceutical companies, who have aggressive control over how disabled people are treated and categorized in capitalist society. The motivation is very strong for supporting small scale production of medicine, and while small scale DIY production provides an option for accessing medical treatment in very specific situations, I believe that DIY healthcare overall is fundamentally flawed as a tool for liberation of medicine, and in some ways, interferes with this goal.
A disclaimer - I’m not a medical doctor. I’m a disability activist and theorist, who understands medicine from the perspective of those who are impacted by it. I do have some basic functional knowledge of anatomy and health, but I usually work with other people to fact check my direct medical claims and I don’t believe I have the ability to make judgment on individual medical claims. However, I don’t think the argument against DIY Medicine is one fundamentally based in technique or medical knowledge. The problem isn’t rooted in how safe or dangerous these procedures are - although many are a lot more risky than mass produced techniques - but rather that DIY Medicine is a political dead end for trying to control our relationship with medicine.
DIY Medicine is a broad spectrum of healthcare techniques that can be loosely defined as those that are modifications, production techniques or operations that seat some level of production directly in the hands of patients, bypassing the involvement and approval of doctors. Weaving around federal regulations and attempting to dodge the medical industrial complex, it aims to regain political control of the body and can be popular in some collectives and online communities. These communities share techniques, recipes and general information on a microsocial scale to attempt to capture healthcare knowledge. However, this line of thinking is fundamentally flawed, ignoring complex power relations between medicine and bodies, that ultimately leads to the alienation, suffocation or assimilation of these groups by the power of capitalist Western healthcare.
DIY, in the very name, indicates a specific consumerist, alienated interaction with a procedure. Even in the phrase “Do It Yourself”, one can immediately see how it is a direct instruction for the consumer to perform the labor of assembling the product as a selling feature. In almost all relevant contexts, the DIYer is instructed through predefined alienated frameworks, in a manner similar to a factory worker, to reproduce the product in their own home. Regardless of whether the DIY product is part of a line of products similar to IKEA or interchangeable automotive parts, or is part of a larger market ecology of products like art supplies, wood, metals and hardware tools benefiting off of DIY communities, or even the media that targets such communities, all DIY as a production approach truly does is move some level of the productive process into the hands of the consumer.
In order to maintain this DIY market, the product at some point along production must be so accessible that most people - not just those with material knowledge of the components - can assemble the product. For example, do we really learn carpentry when we assemble an IKEA table, or learn electronics engineering by following an Arduino tutorial online? Or do we learn how to take a set of prefabricated parts and assemble them in nearly the same way every time? These products are designed for reproduction of the final assembly with no supervision. Instead, what we are learning is not the interactions between material and physics, but rather a set of linear instructions mapped onto commercial products. These instructions produce the interface between these products and the consumer, causing the consumer to act as a form of distributed mass production, where the only difference is that the final construction is also assembled by the user. Like the workers on the assembly line, this consumer knows nothing about how the product really was sourced, and now exists in a new layer of alienation, where they believe through the consumption of their own labor of final assembly that they somehow own some level of the means of production, while in reality even further from the source of production. Does this really emancipate the consumer and allow them to free themselves from the consumer pipeline? What is really being learned by consumers is a labor procedure produced by the real owners of the means of production - the manufacturers of the materials and the producers of DIY mass media - which allows them to transform part of the labor process into a commodity itself, exploiting value.
Taking out the corporation as a source of these instructions doesn’t stop this problem of alienation and exploitation, it merely deterritorializes it. This is where one find themselves with DIY Healthcare. When people read online on how to produce their own medication or treatment, they do so without the context of understanding the structures that gave rise to these procedures, and the ones writing the instructions, even if they are members of their own communities, ultimately hold incredible power over this means of production. These instructions given exist nearly context-less in a vacuum. Users don’t understand why manufacturing, diagnosis, treatment and research are intimately related to each other, nor do they remotely understand the political relations between them, and so replicating these structures without meaningful context produces unreliable results. Nor can DIY medicine be compared to minority medicine, such as indigenous medicine or traditional Chinese medicine, both of which have an entire cultural context in of their own that produces their own descriptions of medicine. DIY medicine is nothing more than another form of black box medicine, the very alienated relationship with healthcare DIY tries to avoid.
Take for example the hacking of diabetes devices. While on the surface such a movement to modify insulin pumps and monitors seems potentially powerful, allowing for more customization of the insulin release, what is important to understand here is that most users are unable to understand the way the physical machine works, nor do they understand the modifications required to actually make these hacks. They don’t understand how the machine even monitors their blood, nor doses the insulin - all they understand is the interface provided by the developers. Even when the developers open source the changes, the entire set of signs that produced the relationship between blood, strip, syringe, tube and machine is still completely obfuscated from the average diabetic. Not only this, but the production of these solutions is completely alienated from the majority of users. Most people using these hacks do not interact with the developers or provide feedback. Even the machine itself works against this cause: because it is a proprietary device, has a lot of documentation about its structure that is completely inaccessible to the developers of these hacks, giving them a massive technical disadvantage in comparison to the producer. What this all leads to is a set of serious disadvantages caused by the alienated production chain, with consequences such as inaccurate readings or delayed responses that many would not be willing to risk their lives or well being on.
The problem of DIY hacks goes much further than this however. The medical industry is extremely profitable and growing at an incredible rate, worth over 8 trillion USD in 2018, giving major incentive for capital investors to invest heavily in experimental new techniques of dispensing medicine to individuals while reducing production costs. What DIY hacks have really demonstrated to future investors is the existence of a new untapped medical market. Board room directors are not discussing how DIY hacks are threatening their business, rather, how they can replace the niche that has been carved by these DIY hackers. The technical disadvantage presented by the privatization barrier allows the product owners to simply copy this hacker niche, but with more research, more reliability, more government approval and more means to push the “revolution” to doctors and hospitals. They already have access to the entire distribution line of medicine as a part of their current production model. This process of capture is nothing new to the world of disabled technology - even I have witnessed it directly as a hobbyist audio game developer - when the work of the blind developers and gamers were captured by the press, a new market exploded to capitalize on “accessibility”, completely replacing many parts of the DIY scene and transforming accessibility into something that disabled people once again had little power over. Disabled people win little by playing this game.
Additionally, without access or understanding to the semiology of the medicine that describes and created these diagnoses in the first place, DIYers can also never hope to produce meaningful research to improve medical treatments for these procedures. A DIY hacker has little physical access to the thousands of samples required to research their procedure and improve its capabilities with minimal harm to patients - most do not even have the medical knowledge necessary to understand the context of what they are doing now as hackers. Even if medically trained people are involved in the development, education and spread of these techniques, they are simply outnumbered by the number of medical professionals who reinforce the status quo of medicine, and are less able to adapt to making mistakes in a precarious field. At the very most, DIY hacking has only two options: it can only replicate or modify what capitalism has already created, with no context or ability to escape its embedded structures, or it can try to create its own product, which is expensive, difficult and often lacking in necessary research and development resources to compete with corporate healthcare. In most situations, when this kind of promising medical technology is presented, it will not be able to deliver on lack of resources and simply be replicated far more sophisticated by a major research corporation.
Indeed, because of the risks involved with such modifications, it actually opposes the ability for society to radicalize treatments. The largest government opposition to this kind of radical change - medical regulation - exists as a consequence of the Western privatized relationship with medicine. Regulation of consumer medicine is a necessary development in a free market, where all consumers can rely upon is signs of effectiveness on the packaging, which can easily be fabricated. The Food and Drug Administration (FDA) wasn’t created to control the relationship with our bodies and medicine so much as it was to control the rampant use of false signifiers and unsafe practices in a capitalist alienated healthcare system. It does so by acting as a sort of state enacting authority (along with other government institutions of health) to regulate, define and clarify what counts as health and food statements, along with regulating minimum expectations of product quality. In it’s feeble attempts to tackle this problem, it also captures all opposition to western medicine, which has lead to the oppression of minority medicine and radical disability and queer movements surrounding medicine through the decades.
This additional suppression based on regulating the signs of medicine is what produces the watertight apparatus that allowed privatized corporations to seize full control over the production of all aspects of medicine, ranging from supplies to medication to the literature. Its this very alienation from healthcare exploited for profit that requires this control to be created in the first place! DIY treatments, with their lack of regulation and approval, are an easy way to get the state investigating these kinds of radical operations, each event which pulls the public conscious further and further away from revolutionizing healthcare out of fear of serious injury or death, and reinforcing the social power of the instutition of medicine. All it takes is enough reports of complaints and injuries from these techniques to warrant an investigation. Any serious attempt to radicalize healthcare must consider this problem with how privatized healthcare interacts with our bodies and government regulation.
I cannot stress enough how serious the issue of our relationship with healthcare must be taken in these situations. This is not merely about cuts and bruises - people’s lives and well being are what is at stake here. The alienation that DIY approaches produce creates a risky situation for disabled people at the cost of the taste of simulated freedom. It forces a group of people who already struggle with production to be responsible for the production of their own healthcare - a responsibility that can result in preventable disease, infection, suffering and death. As a result of their inadequate analysis, DIYers, unable to accommodate the needs of most disabled people, have a strong unconscious biased selection against disabled people who do not need intensive care, major accessibility changes or medication for long term survival to base their success stories on; or they rely on the stories of people who already have access to the corporate produced machines and are simply modifying them for their own needs. They are also unaware of how their own actions produce future market niches that invalidate all progress made in regaining control over healthcare. What does either sample really demonstrate about health as a whole when the need to actually understand health is completely removed from the equation?
This alienated form of medicine that will surely be captured by capitalist apparatuses in the next 20 years exposes many disabled people to serious risk with little means of compensation or protection if they were subject to such an extended attitude towards healthcare. The healthcare industry already has a reputation of using chronic disability as a potential means to obscure the damage of their procedures, and using user responsibility against people who are already disabled or trying to care for a disabled person as a means to shed as much responsibility from their risky practices as possible. This capture of the DIY industry will ultimately be catastrophic, as those captured by it who need the most help receiving treatment will ultimately be invisibly impacted by its gross mass negligence. The medical industry will capture any means of optimizing its production lines as much as it can skit government regulation. It is simply absurd to believe that anything other than a consumer-grade interaction can be achieved with a “DIY” approach, nor that any real revolutionary potential can come from it outside of customizing a consumer device and extending features.
What DIYers seem to forget is that part of the reason why the medical apparatus is outside of their control is because the language of western medicine codifies supplies, medicine and care in a language that facilitates privatized mass production. That is to say, as Guattari has reminded us many times - the language is produced by the machines of capital investor medicine - and we need to seize the means of sign production, rather than wasting our time with playing with the signs they produced. Not only this, but nearly every healthcare institution has incentive to obscure their knowledge from the public. Research laboratories, for example, are committed to commerical, not social needs, regarding medicine, and researchers are placed on projects where they have little to no contribution to the actual sign production surrounding the research. Medical research publications for example has major financial incentives to privatize and obscure information from the public, even from the authors themselves. Services like Libgen and Scihub are indispensable to the lives of disabled and other oppressed people in comparison to DIY healthcare because it liberates this knowledge to the public and allows them to move away from this privatized structure in a more meaningful way, and perhaps even organize socialized medicine movements.
The real problem is that the people do not own the means to medical production - research, education, treatment or otherwise - a problem that DIY healthcare does not have the social tools to solve. The revolutions in healthcare lie, in my opinion, in combining the efforts of the patient with the doctors and researchers - the working class of the medical industry - to produce a serious social challenge to the way things are. Contrary to popular belief of many reactionary anti-western medicine advocates, doctors and researchers are not programmed to be malicious evil people who want to control their lives, but rather people who are granted a special power in society, which can either be abused or become complicit in these structures. Their failures are often systemic as a result both of the requirements of their labor and the extreme amount of financial debt they are forced to endure. Their arrogance and strong beliefs are a result of their experiences of being part of this apparatus, which must be tapped into and understood to produce a meaningful challenge to it. Physicians, researchers and patients are made as enemies not because of their inherent conflicts but because of their position in the regime of privately owned medical signs, that are produced by organizations and people who could not give a single damn about anything more than money. They have significant important power in the discussion and our goals should be oriented towards involving them in thinking differently, challenging the world of medicine that they learned dispensed from pharmaceutical companies and government policies attempting desperately to patch the problems of medicine and capitalism. DIY represents nothing more than a distraction from real socialized healthcare.