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What is a need? What is an illness?

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.

Corpus thoughts and rec

First, a warning.

If you have medical trauma, this book will be hard to read. If you’ve had to face serious illness, it will be heard to read. If you’ve had to deal with chronic health problems, if your brain lies to you sometimes, if you are disabled: reading this anthology will be hard, because you will see yourself and your loved ones in it. Don’t feel obligated to read it, but it’s cathartic as fuck.

Corpus is a comics anthology divided into three sections: physical, mental, and medical. It’s abundantly clear from the stories that's not a neat or exact division. Many (most?) of us have experiences in more than one of the categories. Buy it here digitally:

One nice part of anthologies is how diverse perspectives and experiences can be represented in the same book. There’s a huge variance of perspective in disability perspectives and art styles and writing styles and experiences and diagnoses.

I picked up my copy at Emerald City Comic-con, met a few of the contributors, asked them to sign their stories. Even without that experience, everything in here is so intensely personal that I feel like I already know these people. There’s trans mental illness stories and medical mistreatment stories and diabetes problems stories and other stories shared with people I love, and sometimes even with myself. Hereditary depression. Unsure self image. Asthma. Not knowing your own limits. Knowing them way too well because you can’t stop crashing into them. "Mental illness is something that happened to other people."

No other book I’ve read has reached so intensely into experiences of illness and messy embodiment, or represented them so well.

I don’t feel all of these ways all the time. But I feel many of them some of the time, and at least one of them most of the time. The core of the chronically ill experience resides somewhere in this book.

TransJewCon and an abundance of disability feelings

I’d heard of Rabbi Emet Tauber zt’’l before my New York trip, and very much wanted to meet him at the Trans Jews Are Here event (or elsewhere, I’m not picky). Because I didn’t know him, because our social connections remained indirect, maybe because he didn’t know either, I had no idea he was so close to death. Even though I don’t know him, R’ Emet’s death is fucking with me, emotionally. I forget sometimes that EDS is terminal, not just inconvenient and disabling. At least one of my favorite people has EDS, as does their kid; my old doctors thought i might too.

I know I’m not supposed to want a cure, or feel sad about disability, but the abundance of people like me in communities like mine is rough. How many people die young, and how many of us are suffering? The number of disabled folks at Trans Jews Are Here was both fulfilling and difficult for me. Disability and impairment rob us of productivity, not just in the shitty capitalistic way but creatively, spiritually, interpersonally, religiously. It’s at best a tax paid in money or time we could be spending elsewhere, whether due to demanding access in a world built for other people or pushing back against a body behaving poorly or both. How much time that could be spent creating trans jewish art and spaces and community is spent waiting at the pharmacy? We are suffering, and some of the best of us are dying young. How many Jewish trans folks are destined to become rabbis but can’t? How many trans disabled people are destined to become Jewish but can’t?

It’s frustrating existing in a world not built for you, and it’s lonely as hell having to build so many spaces, to put time into projects that might disappear, even just as an attendee to balance complaints and criticisms with worries about whether they'll be seen as an excuse to cancel the next one. Disability is alienating. Transness can be too, depending on where you are; same with Judaism. It is hard to be like this and find community, even temporary, even in miniature talmud retreats and friend of friend connections, in chavurahs that make a minyan maybe once a year, in I-see-you nods across a crowded shul to the other GNC mobility device user, in sitting on the sidelines with a nice lesbian couple at the yiddish socialist concert where your chevruta’s in the opening band and you were worried about there not being a place to sit but wanted so badly to go anyway.

It feels so good and beautiful and necessary to make these spaces, and it is so tiring, and much harder if you’re disabled. My favorite part of this weekend was that I didn’t have to plan it, that I was around so many trans jews and I didn’t have to pinch-hit read torah or set myself a reminder to ping the email list or see if my friend is out of the hospital or give people rides or check on the organizers. I’m burning out, and I don’t work, and I have a secure living situation, and I don’t do this full time or for a living, and if I stop, maybe the next Emet will die before he finds any of us, so I can’t stop.

I can’t stop thinking about how I don’t have the mental energy to lead two seders this year, so I won’t be doing another internet seder when the one last year made me friends and was the only one at least two people could attend and the only one more people wanted to go to.

I can’t stop thinking about the many, many, many trans jews by choice I know, so many also disabled, continuing to struggle to find a class and rabbi that doesn’t deny their existence, that doesn’t take transness or queerness or nonbinariness as a reason to reject someone, when they deserve a community that will truly bring them into the fold and love them fully as trans jews.
I can’t stop thinking about the Kaddish podcast episode about trans tahara. What happens when nonbinary Jews die? Who performs tahara? Do I need to up my observance levels and go birth stealth and be trained so there is somebody here? Can I even do that, physically? What if I die, what if my friends die, what happens?

I want the world to be better than it is, for us and for them and for future generations, and I constantly run into inaccessibility struggles for myself while trying to bring the world into a position closer to the next, tiny increments closer to wholeness, repair, moshiach. I’m holding fragments. We are all holding fragments. What now?