It is possible to adapt to a given situation precisely because you have got to live it, and you have got to live it every day. But adapting does not mean that you forget. You go to the mill every day — it is always unacceptable to you, it has always been unacceptable to you, and it remains so for life — but you adapt in the sense that you cannot continue to live in a state of conflict with yourself.
— Steve Biko1 Once in a while you will stumble upon the truth, but most of us manage to pick ourselves up and hurry along as if nothing had happened.
— Winston Churchill2
Human rights: Illusion and hope?
Those of us in health care who work on “the ground,” as it is commonly called, occasionally have doubts about the relationship between human rights and health. That is, when we have time to consider such matters.
What are our questions, and why do we have such doubts? We wonder if it is possible to uphold human rights ideals within the health care arena, if it is possible to adhere to the principles that have, in fact, nurtured the roots of our own dedication to each day’s work. Why? Perhaps it is because we must deliver as many as 30 babies on one clinic shift shared with only one other colleague. Perhaps it is because we perform more than three hysterectomies each week for ruptured uteri. Or because we see more than one mother die in childbirth every few days. Maybe it is because we were taught how to treat life-threatening conditions, but we lack the drugs, equipment, and professional staff to provide such basic treatment. Perhaps it is because we feel as desperate as the women that we care for. Even after we publish books and articles on these crucial issues for concerned colleagues in more affluent cultures, we wonder: will these conditions ever change?3 Will the women that we treat ever be able to experience pregnancy and childbirth with the same joyful anticipation as their sisters in more prosperous societies? Can we ever look forward to a time when expectant mothers in our communities might confidently be assured that they will be treated with dignity and respect — or to a time when they might know that everything possible will be done to ensure their health and safety and that of their children? Can our patients and clients — our mothers, sisters, and daughters — ever dream such dreams?
The evidence is not very encouraging. In Africa, for example, the maternal mortality ratio (MMR) is cause for shame and an acknowledgment of failure. While the MMRs of the affluent world vary between 5 and 20 maternal deaths per 100,000 deliveries, those of poor countries range between 250 and 1800.4 Tragically, we can generally expect that the newborn child of each mother who dies in our wards during childbirth will die as well. These losses are personal for us — if we have and take the time to think about them. This is a shared failure.
When all that can be said about such a young woman’s death is said; when the medical explanations are complete; when it is determined that her death could have been prevented; when her grieving family is on the road home and another patient lies in her bed or her place on the clinic floor, we then wonder about human rights and indeed, about humanity itself, both the woman’s and our own. Where were her rights? Where was our humanity? We tried to give her “health” care — but failed. We face our own responses: outrage, frustration, guilt, sadness, failure, and they creep through us slowly, overtake us. As justified and frequent as these feelings are, however, we do not experience them each time a woman dies under similar circumstances. Sometimes even the most horrific maternal death has no effect on us at all. Then we must wonder: are we still human? Will numbness eventually take over, dull our emotions entirely, and prevent us from continuing to fight to save the lives of these deserving women and children? We then ask how real, and possible, human rights are for the women who must put their faith in our care. Can we ever believe that these rights will help improve conditions for them or that they will ever know true justice?
Those of us who face such crises often look to human rights for the possibility of relief. At such dispiriting times, human rights can seem very appealing, even comforting. We cling to the hope that they are within reach for the many woman and children in our communities. The very existence — the promise — of human rights suggests that there is something that we can do, something that we can fight for. The premature deaths that we see daily are, without a doubt, injustices. It is unjust that women and children must die simply because we have only one operating theater for 12,000 babies each year. It is unjust that even one baby dies because there are too few health workers to administer a simple throat swab to allow it to breathe. Such deficiencies are injustices, in and of themselves. The women in our communities deserve much better; they deserve justice, fairness, and dignity, but we are at a loss as to how to ensure that they receive these. In failing these women, we inadvertently perpetuate injustices. Despite the inadequacies that often guarantee our failure, we do what we can; against all odds, we continue to feel an overwhelming need for justice. Its absence is so palpable, our longing so great, that we sometimes see dignity where there is none, life where there is none, justice where there is none.
We resist dehumanizing numbness by trying to keep in mind the rights of each patient as if each, in fact, had access to them. Yet even our passion and imagination cannot ensure rights or equitable treatment for the poor women in our poor countries. Envisioning the potential of human rights works as a palliative for us, but not for these women. Acknowledging their human rights at least gives us a framework for hoping that these women may eventually enjoy them. We are encouraged by the mere fact that people are talking about such rights — in official discussions around the world, in the media, and among people who may include even our own politicians. We are glad to be reminded, repeatedly, that human rights do exist, that they are good and attainable and that we may also enjoy them some day.5 But can we truly hope that these rights are within the reach of our patients?
Rights in real terms
The fact is that believing in human rights does not make them real in our communities. We who work among the poor, who belong to their places and share their experiences, know too well what it means to deliver a baby amidst circumstances marked by total deprivation. We can easily imagine the “delivery” of human rights meeting a similar fate in our communities. We too often live with the fear that health care in such deprived communities may be beyond the reach of human rights. Can nascent health and human rights, once delivered, survive “on the ground” in such societies? Like the infant struggling to breathe, both health and human rights demand our attention, our struggle, and our painful commitment to give them the opportunity to breathe and to survive. It seems that this cannot happen until we change the way human rights are perceived. One area that must change is the dynamics of human rights responsibilities.
Jonathan Mann’s classic book, Health and Human Rights, defines human rights in terms of six basic characteristics: 1) all people have rights just because they are human; 2) human rights are universal; 3) human rights treat all people as equal; 4) human rights are primarily individual rights (they address directly the relationship between governments and individuals); 5) human rights encompass the fundamental principles of humanity; and 6) promotion and protection of human rights is not limited by frontiers of national states.6 As they are discussed and practiced, human rights are sometimes divided into two separate realms, each treated as if it functioned autonomously. In one realm we speak of “civil and political rights,” and in the other, of “economic, social, and cultural rights.”7 A somewhat similar, parallel divide exists for health workers in a poor country, when they distinguish between “primary health care” and advanced “curative health care.”8 Such distinctions within rights and health care, however, fail to appreciate the holistic nature of both. Just as there is no good health care without both primary and advanced curative care, so it is impossible to enjoy civil or political rights if one is unable to enjoy economic and social rights as well. While some people question the value of “second generation human rights” (as economic and social rights are sometimes termed), civil and political rights are meaningless without economic and social rights.9 A division such as this perpetuates injustice, and in poor areas of the world, maternal and perinatal mortality and morbidity are just two stark examples of the result. The United Nations Committee on Economic, Social and Cultural Rights recognized this dilemma when it formulated minimum standards to define when the most basic of human rights have been violated.10
What does this mean in real terms, in terms of how a poor woman lives and delivers her child in a poor country? Paul Farmer posed a question that goes to the core of this problem when he asked whether there is a (human) right to suture material.11 In other words, where is the connection between a human right and its enjoyment? What ultimate value is the human – “right” – to life if there is no right to the sutures needed by the woman with a vaginal tear who is dying of postpartum hemorrhage? In such a situation, the “human right” has no value. It is worth nothing to the dying woman or to the health workers who cared for her in vain. Nor should such a right have any value to lawyers, campaigners, politicians, or the “general public” who care about human rights. A human right in and of itself means nothing if it cannot be realized in practice.
What is “more”?
How does one ensure that the means for enjoying human rights are in place? For many people, the answer is a legal one — to sue the violators, as well as those who allow the right but deny the means for its enjoyment.12 This approach may seem logical, but responsibility for the violation of a patient’s “right” to adequate hospital equipment is difficult to assign.13 Who should be sued when there are no sutures — and a patient’s “right” to sutures has been violated? Have the hospital workers been negligent, or the higher authorities who make decisions for their region’s or nation’s health care facilities? Who is at fault if sutures were not ordered simply because they were considered a low priority or because there was not enough money to buy them? Perhaps the fault lies with those who have the means to ensure adequate care but fail to provide it because they are outsiders? How far does one extend responsibility for humans and human rights? If a state fails to protect the human rights of its citizens, should the 21st-century international community refuse any responsibility for countries where mothers are dying in childbirth at rates that are medieval?14 What is acceptable about spending money for paper to produce reports, policy roadmaps, and recommendations without providing sutures, needle holders, and the hands that will use them to stop lethal hemorrhage?15 What holds us back? For those who say they cannot do more, what is “more”?
I suggest that doing “more” is to directly involve the people who work “on the ground,” because we know through experience the needs of the women in our communities. “More” is to feel responsible when our sisters in poor countries die because their human rights did not include sutures. “More” is to learn from the failures of the past.16 If human rights are universal, then there is a universal responsibility for enabling their enjoyment. If we understand the universality of human rights and humanity in this way, the people dying “on the ground” might have a chance.
As long as human rights are rhetorical ideals, we who treat poor women in poor countries will face continued suffering each day and grieve over the corpses of their prematurely ended lives. And yet we continue to hope. Perhaps one day health and human rights may truly unite and take shape among us, sharing the ground with us. Perhaps on that day our women and their children will thrive and can truly believe that health and human rights are — like their own lives and human potential — fragile, precious, and attainable.
References
1. S. Biko, Black Consciousness in South Africa (London: Arnold, 1978).
2. A. Jay (ed), The Oxford Dictionary of Political Quotations. (Oxford: Oxford University Press, 2001): p. 86
3. See for example, T. Meguid and E. Mwenyekonde, The Department of Obstetrics & Gynaecology at Kamuzu Central Hospital and Bottom Hospital, Lilongwe, Malawi: A Situation Analysis (electronic publication, 2005). Available at http://www.who.int/management/country/mwi/kamuzu_hospital.pdf. Accessed January 7, 2008.
4. World Health Organization, The World Health Report 2005: Making Every Mother and Child Count (Geneva: WHO, 2005): pp. 212–219.
5. In 2007, a Google search found about 300,000,000 web pages for “human rights.”
6. J. M. Mann, S. Gruskin, M. A. Grodin, and G. J. Annas (eds), Health and Human Rights: A Reader (New York: Routledge, 1999): pp. 21–22.
7. H. J. Steiner, P. Alston, and R. Goodman (eds), International Human Rights in Context: Law, Politics, Morals, 3rd Edition. (Oxford: Oxford University Press, 2008): pp. 151–262, 263–374.
8. T. Meguid, The Challenge of the Periphery (Cape Town & Windhoek: Harps, 2001): pp. 12–20.
9. M. R. Ishay, The History of Human Rights: From Ancient Times to the Globalization Era (Berkeley: University of California Press, 2004): pp. 173–243.
10. United Nations Committee on Economic, Social and Cultural Rights, General Comment No. 14, The right to the highest attainable standard of health (2000). UN Document E/C.12/2000/4. Available at http://www.unhchr.ch/tbs/doc.nsf/(symbol)/E.C.12.2000.4.En?OpenDocument.
11. P. Farmer, “Challenging Orthodoxies in Health and Human Rights,” Plenary Address, 134th Annual Meeting of the American Public Health Association (Boston, MA, November 5, 2006).
12. H. V. Hogerzeil, M. Samson, J.V. Casanovas, and L. Rahmani-Ocora, “Is Access to Essential Medicines as Part of the Fulfilment of the Right to Health Enforceable through the Courts?” Lancet 388 (2006): pp. 305–311.
13. Minister of Health and Others v. Treatment Action Campaign and Others2002 (10) BCLR (CC), South Africa.
14. T. Meguid, S. Mshelia, G. M. Chiudzu, G. Kafulafula, and E. Masache, “The Obstinate Maternal Mortality Ratio for Malawi: An Insult beyond the Obstetrician! A Cri de Coeur,” Malawi Medical Journal 19 (2007): pp. 9–10.
15. For example, a keyword search performed in 2007 found that The Lancet alone had published more than 1200 articles discussing human rights in the preceding five years.
16. P. Farmer, Pathologies of Power: Health, Human Rights, and the New War on the Poor (Berkeley: University of California Press, 2005): pp. 213–246.