I never know what to think of Ivan Illich’s writing. He’s certainly intelligent and angry both. My brain is not cut out for reading this kind of academic writing and yet I’m probably going to keep doing it anyway. I recently read his essay Disabling Professions (PDF of whole book). I part ways with him when it comes to medicine's primary role, which is not exclusively social control. Healthcare as social control is neither entirely incorrect nor entirely correct, as some of us would suffer or die left to our own devices.

Not everyone has the same needs. Defining needs by general consensus will hurt sick and disabled people. Is a ramp, earplugs, antibiotics, antipsychotics, insulin, methotrexate, IUD, hormone gel, physical therapy, talk therapy, sharps disposal containers a need? a want? an accommodation? Do disabled people with persistent actual medical needs exist in Illich's schema? There is no point in discussing health needs without considering those of us outside "get better on your own, or die." The borders of what conditions are considered diseases shift over time and between societies, but this does not mean that the concept of disease, of a need for medical care, is irrelevant.

Who is the source of truth, the doctor or the patient? Medical tests or diagnostic flowcharts or reported symptoms? It’s subjective. We can point to a person near death and go: they are unhealthy. We can point to a person who is functioning well independently and go: they are healthy. But the rest of us are in between.

In denying the doctor as source-of-truth, Illich skips entirely the possibility that patients hold the truth about our own bodies. Scholars and philosophers point out the hidden cultural implications involved in who holds the truths of illness; they poke holes in medical providers as Truth Tellers; but in the process they wipe out the patient as truth-holder, implying or outright stating we’re all deluded customers contributing to cultural narratives of overmedicalization and false needs. Patients are more than mindless consumers of healthcare, that sometimes our bodies have problems that require more care than we can provide for ourselves; that some type of medical care system is necessary.

I am a chronically ill person who medical professionals see as a problem, or a faker, or a not-their-problem-ask-another-specialist. With this personal context, with these feelings, it is hard to read about purely-social disability, or the sick role, or patient-as-consumer. Illich is not entirely wrong: some things medical systems see as illnesses are nothing of the kind—prediabetes or obesity, for example. But seeing this, and knowing that, and experiencing my own consumer labeling as more of a problem child than a money source leads to a bizarre relationship with the text; a relationship paralleled by some negative experiences I’ve had with disability studies texts and communities.

In the social model of disability, impairment and disability are separated out: impairment as the personal, disability as the social effects of it. Disabilities and impairments require accessibility changes in society. This is held in direct competition with the medical model of disability: that the individual needs treatment for any- and everything that could be considered disabling.

In social/medical models of disability discussions, we focus on defining disability but relatively little energy on defining disease or illness. Certain disabilities are declared not a disease, certain conditions considered not an impairment or an illness; chronic illness and disability are seen as, and act as, two allied yet distinct communities.

There is a huge and ongoing schism in disability and chronic illness communities: that of cure. There are many condition- (or disability- or impairment-) -specific organizations that focus on a search for a cure for that given issue; often (but not always) they are led by relatives of those affected or other abled/healthy people with a charity mindset. The medical research system, it is said, is overly in favor of curing us, of making us seem normal, of eradicating our multitudes of experiences and lives and differences in favor of becoming Illich’s mindless consumers of healthcare instead, bowing to overmedicalization of things that don’t need to be actually treated, because they are not problems; an ableist society is the problem.

I have spent years of my life considering myself a "bad" disabled, never to be a disability activist, because I would love a cure for my chronic physical illness. What i wish for in a cure, or even a more ideal treatment, is not to seem non disabled but to not be in pain; to have more energy again; to have more freedom in my life. Since then, I have learned that many other chronic illness sufferers feel the same way; we want increased accessibility but also, at the same time, treatments and cures for our actual impairments and problems. Even with a cure available, there will be disabled people; the existence of a cure does not make its use compulsory (or even accessible—see how that turned out for Gilead Pharmaceuticals’ Hepatitis C cures).

I know today’s medical systems would absolutely see cure as compulsory. But it is awfully reactionary to say: therefore, we should not admit to desiring one at all. Why is the major narrative around cure "don’t" rather than "shouldn’t be obligatory"? Why "everything medicalized is overmedicalized" rather than "we should focus on patients’ needs as perceived by those patients, rather than as perceived by the medical system?"

Is it better to not exist, as in Illich’s schema, or to have the wrong feelings about an existing set of impairments? Is it worth arguing about a cure, knowing in your heart that your feelings are considered unethical by many?

There is another personal feelings angle: I did try to be a professional. I was almost a career disability advocate. Almost a public health policy worker. I went to school, first for one thing then another; I watched the healthism and gatekeeping aspects of public health as my politics shifted left of (most of) the field.

What is it like to have community around what you do? Each time I’ve begun to feel like i’m among colleagues, something changes and it doesn’t stick. I self-separate out, or the group falls apart, or I can’t bear to drag everyone else down any longer. I’m the kind of person who has a series of unconnected jobs and miscellaneous overeducations, trainings and skills in whatever flight of fancy appeals at the moment. In the dark corners of self-doubt, I wonder how much of my retroactive disapproval of public-health-the-entity, of academia, of disability nonprofits, of disaster planning and response, of—most relevantly here—critiques of medicalization, is because I failed to develop a career in any of them.

Illich himself was a Catholic priest as well as being a scholar. It seems likely that his work around professions and professionalization, of the production and spread of knowledge, are built from personal feelings; if he, too, felt betrayed by these systems and used that to fuel his tirades of legitimate critiques. If my feelings are caught up in my responses to his work, maybe that’s fine. If my experiences shape my reactions, maybe that’s even good: what better than personal experiences with the harsh edges of overarching social systems, as proof of either their necessity or their harm or both?

Somewhere in my brain, there’s a version of this essay that goes further. A version that directly discusses the changes occurring in medical authority at the time Illich was writing, and in the decades since. A version that brings together dry science facts and personal experience and Illich and Starr and others’ writings, about authority and medicine and the social construction of disease and the difficulty of having a nonconforming body in the trans way, tying in public health as an engine of social conformity, of wellness and illness and health. But for now, as I am a chronically ill/disabled person dealing with insufficient medical treatment, this is what we have: an incomplete version while I get my bodymind a little more on track, working on meeting those newly-created quasi-needs like chronic pain and depression and insomnia.