Health care in the United States is being defined as a human rights issue, but only in one dimension — economic justice and access. I completely support universal health care under a single payer system or some equivalent that will eliminate profit (as much as possible) from all parts of the health care system and provide everyone with what they need, irrespective of ability to pay. But two other aspects of health as a human right are left out: autonomy in principle and practice, and quality.
We are familiar with the autonomy issue in mental health, where it’s bounded and limited by the state’s coercive power delegated to psychiatrists. It is hard for many people to imagine what mental health would even look like if the state’s coercive power in this field were simply removed and taken out of the equation. For example, when I asked Jaako Seikkula of Open Dialogue, at the INTAR Conference in NY several years ago, whether they used forced treatment, he answered that the law allowed them to, and when I pressed him on what they would do if the law didn’t allow it, he wouldn’t or couldn’t answer.
Even in psychiatry and mental health, there is a lot of coercion that happens without any threat of the legalized abuses (commitment and forced treatment), similar to how it has also come to operate in ordinary health care. With depression screening, substance abuse screening, and now dementia screening increasingly prioritized in primary care (at a recent visit, I received no questions about my physical health but was asked to fill out depression and substance abuse questionnaires) the line is less and less clear in any case. (This is one of the reasons I have never supported the incorporation of mental health into general health care; another is the zealous prescribing of psych drugs.) BMI (body mass index) questionnaires and smoking cessation programs represent other areas in health where one’s own behavior is liable to be coerced informally and possibly more formally as time goes on.
It is still possible to refuse to answer questions or participate in screenings, but one is not informed beforehand about the nature of the questions or given the explicit option to accept or refuse. The onus is on the person in a stressed condition of seeking health care to weigh up the potential consequences of participating or not participating, if one even spots what is happening and has become informed enough to have an opinion about it.
Outside the mental health context and some related disability movements (like autistic people), there is currently no movement advocating for autonomy in health care. The feminist women’s health movement, which had promoted taking charge of one’s own health and questioned the hierarchies in medicine (e.g. why do doctors often call us by our first names but introduce themselves as Doctor So-and-so?), has come to focus on access to reproductive health care and choices, including contraception and abortion — highly important but not the whole picture. (They have also paid some attention to women’s differential physical markers and symptoms in health conditions that affect both sexes.) Reproductive rights are, moreover, as currently advocated, an issue on which providers and consumers of health care are agreeing. But something is lost, a great deal is lost, when we give up an independent advocacy platform about our own bodies and subsume our needs and rights into what medical professionals are motivated to fight for on our behalf. Fibromyalgia and many conditions unexplained in conventional western medicine, or simply asking a lot of questions, still result in dismissal and psychiatric referrals for many women — from my limited experience, disproportionately for women compared with men.
Midwifery and natural childbirth is also a genuine movement that still exists in part outside the medical profession, and, similar to homeschooling, has appealed to religious conservatives at least equally as to leftists. But again, though midwifery when practiced based on traditional principles can be genuinely about empowerment, based on profound respect for the power of women in the activity of childbirth and beyond, it is again an area where providers and consumers, if those terms are meaningful, are in agreement, though providers are unorthodox and outside the hegemony of the medical profession and its legal and financial policy structures. Also, midwifery pertains to one area of life, and only to women who become pregnant (i.e. generally not lesbians).
Herbal knowledge and similar knowledge and practices outside conventional medicine are still being practiced and shared, but are separated from the financing of conventional health care and also from the knowledge systems of conventional medicine. So it is left to the person to advocate and fight for herself in many spaces, and even some alternative practitioners act in ways that are controlling and even potentially coercive. (For example, a naturopath once asked if I could drive myself home, after she had given me an acupuncture treatment that left me woozy, and said that if I couldn’t she might have to take action as I could be a danger to myself or others. You’d best believe I got out of there and drove myself home, and never went back.) Also, such practitioners do not necessarily see their role as educative and collaborative with a person who is in the best position to know and direct her own health needs — that is a philosophical and political standpoint separate from the particular discipline, and perhaps also a question of personal inclination. Knowledge-sharing groups do exist but are not always enough, especially as one gets older.
My experience with the naturopath brings up another aspect of autonomy and legalized coercion. While it is interesting that she apparently invoked a mental health commitment framework despite there being no mental health diagnosis involved (and there would be no basis for mental health commitment absent such a diagnosis), there is a larger issue about mental capacity evaluations and how they are used against people, especially as we get older. Capacity evaluations and the threat of them, even as an implied threat, can be used handily to bully people into accepting health care or screenings they don’t want, or living arrangements they don’t want, or support arrangements they don’t want. In at least some assisted living facilities, mental and physical capacity evaluations can be used to require you to move out of your living space to a ‘different level of care,’ including a locked dementia ward. And a positive finding on a dementia screening (e.g. imperfect memory) can put your medical providers on alert to question your capacity if they hadn’t yet thought to do so.
If you have read my blog before, you probably know that the Convention on the Rights of Persons with Disabilities changes international human rights law with regard to capacity. While the U.S. has not ratified the CRPD, 172 countries have, the vast majority of U.N. member states. This means that the CRPD standards are legally binding in most of the world, and are influencing customary international law in the same direction. In General Comment No. 1 of the Committee on the Rights of Persons with Disabilities, an interpretive document by the expert group designated under the treaty to monitor compliance with its provisions, the Committee said that actual or perceived limitations in mental capacity, or decision-making skill, cannot be used to deprive a person of legal capacity or the right to make decisions. This applies for single decisions as well as the person’s overall status. The CRPD thus prohibits guardianship and other forms of substitute decision-making, and prohibits capacity assessments and their use to coerce people into unwanted health care or living arrangements.
Health care providers are required under CRPD standards to respect the person’s decisions and to offer accommodations and access to independent support if the person wants to avail themselves of these. Support can be useful so long as it is chosen and directed by the person and does not become itself a means of coercion and control.
If capacity assessments and deprivation of autonomy as a result were done away with, the threat could no longer be used to bully people, the same as doing away with the legalized power of psychiatric commitment and forced treatment would mean that express or implied threats of commitment could no longer be used to bully people into taking unwanted drugs.
And still, we would face the problem of how to regulate and safeguard against subtle bullying — systemic bullying like simply starting to do a screening without telling the person what it is and giving them the option to accept or refuse. This could be addressed by laws and policies to strengthen obligations on free and informed consent and make them more consumer-friendly, as opposed to being reduced to a measure that offers providers safety from liability and is probably linked to malpractice insurance. (Similarly, how we deal with accommodations and support arrangements for health care decision-making is going to be crucial to ensuring collaboration with the person in their decision-making and not a manipulated outcome.)
Single payer health care, from what I have been told, would reduce the need for malpractice insurance, since people will be guaranteed the health care they need to repair damage another provider has done, which is reportedly the largest part of malpractice insurance payouts. So it may help to create a better basis on which to address issues of policy such as I am describing here. Yet single payer will not do this automatically, especially if there is no autonomous, independent movement of people taking back their health autonomy, connecting the dots and advocating for it. Single payer without such a movement will continue down the managed care road we are on now, and can even exacerbate managed care tendencies that aim to control people’s health choices through subtle manipulation and passive aggressive techniques such as I am describing.
I’ll say it again: we need an autonomous movement of people taking back our own health, independent from any health care providers and willing to question pre-existing law and policy from the bottom up. It needs to have a feminist component, and components related to anti-colonialism and centering communities of color, but it has to encompass everyone and put all of us together, including consciousness of what we bring from these standpoints and experiences that mainstream institutions of any kind do not consider or prioritize.
I’ve addressed some quality issues here in passing — in particular there is a dumbing-down that goes with manipulative screenings, and there is the absence of coverage for alternative practitioners. But there is more.
For the past 30 years or so, there has been a shift to what I think of as ‘assembly-line medicine.’ Practitioners are resorting to standardized protocols of one kind or another and not doing as much thinking for themselves. The art of medicine is lost, and so is the science, as it becomes mere conventional wisdom that has a claim to authority despite often being contrary to better evidence.
A health care provider I saw recently made a comment that helped put this into a larger perspective. In response to my questions about different kinds of breast cancer screening, she volunteered that breast MRI would be most effective, but that it isn’t being offered because it’s not cost-effective to give every woman in the relevant age bracket an MRI every year. This raises some potential questions of sex equity that ought to be looked at, and I would like to flag for anyone in a position to do so. But what caught my attention was her use of the phrase “population-based medicine.”
I have seen in many articles for the lay public a similar approach that evaluates statistically the likelihood that a particular treatment or screening will be effective in population terms, and then makes recommendations about whether it should become standard protocol. This approach to medicine treats us not as individuals who each deserve the best possible care, but as mere numbers in a game that is measured by how many people in total, or percentage-wise, benefit or fail to benefit, how many of us die and how many survive a particular condition. Our individual outcome — our suffering or death — is nothing but collateral damage, and doctors who practice this way,increasingly more and more as this is how they are trained, are not able, not empowered, to think for themselves as individuals much less to think together with us as the knowers of our own bodies.
Medical practitioners who still practice the art of medicine, or try to, can be allies here, and they are. Yet we still need an autonomous movement so as not to ever confuse provider interests with every person’s need and right to quality care provided on the basis of respect for the person as knower of their body, and with protections for fully free and informed consent. Many people on this site are more knowledgeable than I am about the quality aspect of health care in particular, and I would love to hear what you can illuminate for me and others who are interested.
3. Our transformative journeys, support and health
Autonomy always exists in a relational context and also pertains to our relations with other beings. We come into the world connected to our mothers and cannot survive without intensive adult support. We come into a human community and do not know life or the world or ourselves separate from our relations to others — learning itself is a creation and re-creation of relationships to the world and to other beings, among other things that it may be. Navigating autonomy is navigating our relationships with other people, and depends on our place in a community, existence of social hierarchies, economic conditions and our needs —what we are willing and able to do to meet our basic needs and how much we are exploiting others or being exploited, including sexual and emotional labor, to make this easier or harder.
Our transformative journeys do not necessarily need support, whether that is in the context of mental health, health, birth or death. But they might. Western conventional medicine has saved, or prolonged, the life of many people I love, and I don’t want to throw that away. I think that there is something about the hegemony and social authority given to the medical profession in capitalist state society that is responsible for part of the problem I am describing with regard to autonomy. I am not sure how much of this is cultural as opposed to legal and economic; how much it may be possible to de-deify doctors and treat them instead as informed advisers and collaborators, informed practitioners with technical skills and training, while we retain responsibility for our own lives and health.
I don’t mean responsibility in the shaming sense of kicking people off welfare benefits or penalizing people for their weight or smoking or drug use. It’s personal responsibility, as our health cannot be something meant to serve others, that is the meaning of health as a human right, since human beings are ends in ourselves, each and every one. It’s responsibility to ourselves that accepts the inevitability of death, sickness, failure, mistakes, catastrophe — the opposite of the American Dream.
Returning to personal responsibility in this sense really just means wiping away the colonialist illusions that America was based on, at least white America. Maybe the hard times we’re in can create this opening, not to stop fighting for our lives and for justice and democracy in all dimensions, rather as a basis for policy and law that is sustainable for human beings and the planet. I do think that capitalism and the state as forms of economic and political organization, and patriarchy as sexual organization, need to be questioned, as those systems treat individuals as means to an end — masses to be exploited and governed by others.
These concluding remarks go beyond health as a human right but relate to it, as our bodies cannot be dissociated from ourselves and our political, economic and sexual existence in the world. Thank you for paying attention.