Health, women, and autonomy

The feminist women’s health movement wasn’t just about abortion and self-examination with speculums.  It was about taking the knowledge and power of health into our own hands, in all aspects of our health.  Herbal knowledge from parts of the world our ancestors came from and where we are now, other kinds of healing traditions both energetic and manipulative.  Some of us learned deeply and trained and became practitioners to treat others, some of us learned enough to apply it to ourselves, more or less well.  Not so different from the knowledge any of our mothers and grandmothers had, to be able to take care of a sick child or elder or anyone the best they knew how.  We also asserted ourselves with doctors who were mostly male and rejected the idea that they knew best because their white coat and stethoscope and degree conferred knowledge stamped with patriarchal institutional authority.  We created, or tried to create, relationships with doctors based on equality, tried to be on first-name basis or otherwise to be on formal basis equally, to be Mary and Jane/Bob, or Ms/Dr/Rev/etc. X and Dr Y, not Mary and Dr Y.  We learned about diagnostic procedures and treatments, pros and cons, and decided for ourselves, sometimes rejected western medicine for holistic medicine of some kind, other times did a combination.

Somewhere along the way things changed.  More women became doctors, and even those who were alternative practitioners – like chiropractors – wanted to be addressed as Dr Y and took on the unequal relationship calling us Mary.  Alternative practitioners created elaborate consent forms that listed everything under the sun that could conceivably go wrong with the treatment so that we absolved them preemptively of any kind of malpractice claims.  Managed care came in and even doctors who wanted to practice the art of medicine were pressured to be assembly-line workers running rote protocols according to the popular evidence-based statistical recommendations of the day.  Population-based medicine is the real meaning of evidence-based; you get what the statistics say is the best overall outcome for a whole population, however large or small that population is defined, and the doctor isn’t expected to really think much about you as a whole person; if she wants to she doesn’t really have the time.  (If she is really extraordinary, wants to serve her patients individually and keeps taking insurance because she isn’t only for rich folks, she has to work serious overtime without pay to keep up.)

The proposal for single payer health care in New York State will not do anything to eliminate these serious structural problems that plague our health care system in addition to the simple lack of access without money.  In fact that proposal if enacted will continue the prioritization of money over people, only as a public system run by the government as cheaply as possible, using the same principles as managed care to treat health as a problem at the level of populations as a whole rather than meeting individual needs.  Paying a ‘capitation rate’ to serve a certain number of patients rather than paying for the services actually used encourages statistical management of the health of the population of patients as a group – achieving a certain statistical outcome for the health center or hospital or geographical region as a whole.  It also encourages manipulative practices to steer patients towards health care decisions that the system deems desirable in prevention or screening or treatment, and the dumbing-down of informed consent practices which are also seriously undermined by their use to avoid malpractice claims which is placed above the patient’s right and need to make well-informed decisions.

The NY single payer proposal brings in an additional requirement that comes directly from managed care, the figure of a care coordinator, who is supposed to ensure that medically necessary services are made available to, and are effectively utilized by, the members.  This is at best a busybody whose calls you can ignore or whom you can direct to leave you alone if you don’t want their attention; at worst, since it would be a requirement to be enrolled with a care coordinator to receive services under the plan, it creates the infrastructure for more aggressive forms of coercion, incentive and disincentive, manipulative opt-out scenarios, being marked down as a troublemaker.

We have already lost our privacy rights thanks to HIPAA, the voluminous federal law on health care privacy that advocates long warned was anti-privacy.  It is hard to get our own records, especially the medical notes that doctors share with each other but prefer to keep hidden from patients lest we dare to read and think about their conclusions for ourselves.  We don’t know what else they keep hidden from us.

The culture of compliance, which some of us know all too well from experience or advocacy in the mental health context, is nauseatingly present and permeating health care today.  I hear of doctors who refuse to treat a patient unless she takes a certain medication that they prescribe (e.g. for high cholesterol), forcing her to lie if she wants to continue receiving treatment that she wants.  The pressure to accept flu shots and other vaccinations is strong.  Screenings and questionnaires sometimes are inordinately interested in personal behavior including such matters as ‘use of illegal drugs,’ alcohol and tobacco use, body mass index, and the ubiquitous depression screening and dementia screening that are designed to capture unsuspecting folks to be initiated into the world of prescribed and enforced psychotropic drugging, and labeled with the kinds of disabilities for which one can have their rights and freedoms taken away.

The NY single payer bill also specifically preserves the existing medicaid managed care plans, including mental health managed care which is required for people covered by medicaid who ‘receive chronic mental health services’ or are labeled as ‘severely and persistently mentally ill’.  I have tried unsuccessfully to get information from reliable sources about how this has worked in practice, but recall that at the time it was enacted there was resistance from the survivor community to this classification and its implications for keeping people tied to a service system that is managerial and essentially institutional even within the community.  (See CRPD Committee’s General Comment 5 on Article 19 and OHCHR study on living independently and being included in the community, both addressing obligations to eliminate institutional forms of care both large and small-scale.)

As I grow older – I will be 59 and eligible to join OLOC on my upcoming birthday – I worry not only about needing health care for the inevitable breakdown of my physical body.  I worry also about the risks to which our society exposes older people of having my legal capacity taken away if someone thinks I am not making good decisions.  I am an ornery and quirky person, I have a great memory for some things and a terrible memory for others, and I don’t want any of the screenings.  Who’s going to stand with me?

 

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