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Q&A: Author Muhammad Zaman on why health care is an impossible dream for 'unpersons'

Muhammad Zaman, author of the book <em>We Wait for a Miracle</em><em>,</em> in his lab at Boston University.
Jackie Ricciardi
/
Boston University
Muhammad Zaman, author of the book We Wait for a Miracle, in his lab at Boston University.

"There are millions of people who remain invisible to us," says Muhammad Zaman in his new book We Wait for a Miracle.

The miracle he is referring to is access to health care.

He's writing about various kinds of displaced people: refugees — people who cross international borders; the internally displaced, who leave their homes but remain in the country; and the stateless, who lack proof of citizenship or national ID cards.

/ Johns Hopkins University Press
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Johns Hopkins University Press

They are "unpersons," Zaman says, quoting the term coined by George Orwell — pushed into displacement by conflict, by climate change, by persecution, by political change.

In the book, Zaman, a biomedical engineer and director of the Center on Forced Displacement at Boston University, tells stories of people from four countries — Colombia, Pakistan, South Sudan and Uganda — who try to obtain care for friends and families in their communities.

The following has been edited for length and clarity.

This question feels terrible to ask you, but if a person does not have any connection to the communities about which you write, why should they care and worry about the health of people?

This is a really good question and an important one: If I have five things to do, and I have time and money only for one, why should this be one?

There are several reasons. One is a fundamental human rights reason. What does it mean for me and you to have a sense of social responsibility toward others? How do we think about our role as people toward others who may have fallen on hard times or who may have difficulty. That shouldn't be a position of pity but a position of a social responsibility.

Second, positive experiences for refugees are important for any community. They're able to contribute to society economically, and they're able to bring new cultures and new ideas and intellectual energy.

Also, I'm not subscribing to this, but let's say for the sake of argument that people who are displaced and are frustrated are more likely to fall into the dangers of radicalism or [a group might] exploit their vulnerability for nefarious purposes. So it is the same argument that we say, well, why is it that we should invest in peace, or why should we invest in education of others? It is good for everybody when people have a chance at a decent, dignified, prosperous life.

And the final thing, when people are living in complex and difficult and environmentally precarious spaces, new diseases do emerge there. By denying access to clean water or, or forcing them to live in close quarters, there's always a danger that new diseases would emerge that would affect everybody else.

Can I ask about the book's title: We Wait for a Miracle. I thought it was an interesting title because you write that there are clear reasons why the displaced lack health care and clear ways to solve these problems. So why this title?

About a third of the book is about the stateless communities in Pakistan. Saida, for example, is not a citizen of Pakistan, where she was born and has lived all her life.

You explain that she is one of a group of ethnic Bengalis who live in what is now Pakistan. After the 1971 civil war split the country into Pakistan and Bangladesh, the Bengalis in Pakistan found themselves stuck and without any documentation.

These were people who were largely from disadvantaged communities. There's no proof they came, they were not given documentation when they were born.

One of the people told me it seems so frustrating and rigid that only a miracle could get them out of their predicament. Because nothing seems to change, there are no policies that are going to take care of them.

So it comes out of a sense of frustration [to believe] that only a miracle would resolve their very legitimate and reasonable desire for adequate and quality health care.

As you write in the book, Saida needs to provide for her son, care for her mother and get health care for her mentally ill brother. She must work as well as repeatedly visit a legal clinic to try and get a national ID card.

It's understandable that many people in her situation believe they need a miracle. But some say it's easy to get health care for these groups of displaced people — just throw money at them, donate to the Red Cross or pay for a hospital. Your book suggests that that's not the case.

I think one should not discount the importance of financial resources. I think that's absolutely critical. But even in the presence of financial resources, imagine a hospital that is for some group of refugees, but you have a very difficult time staffing it with people who are not going to be prejudiced.

Or you may have a hard time staffing that hospital because nobody wants to work there. Or, in some cases, the physicians only come once a month. So the presence of a hospital alone is not going to resolve that problem.

Then, of course, the idea of really making sure that you understand the complex needs of refugees. Too often our focus tends to be on infectious diseases. But that doesn't take away from the fact that the refugees are also facing challenges of mental health or diabetes or cancer or cardiovascular diseases.

So how do you fix it?

First of all, you have to make sure that you take away the dehumanization that is often associated with refugees. Treat them with a sense of dignity, with a sense of respect, with a sense of fundamental human rights. That's it. That's the core starting point.

Then you build the system in a way that incorporate these kinds of challenges that are associated with being a displaced person. You really have to pay attention to their context, so whether it's climate or whether it's conflict or whether it is persecution, the health care is nimble to address that.

The third thing which I think is absolutely important is that we have to provide incentives to train new doctors, nurses. Health-care workers want to work at the best hospitals and get training or career development. Working in these places [for the displaced] is a career dead end, even if you are socially conscious. What you want is for the country to value this work and that it would be an opportunity to continue to grow [professionally]. Pay is a part of that, and creating a research community, to share and learn from these experiences — that is important for everybody's health. These are not very expensive things.

What surprised you most in writing this book?

There are communities that we don't think about: people, for example, who go back [after being displaced].

Our assumption is that when people go back home, all is well and everything is perfect. But in South Sudan — somebody who was a refugee comes back and the condition of the place is actually worse than when they left. If we really want to solve [getting displaced people health care], which I think is possible, we really have to understand the nuances and the shades of this.

And you note that many of the medical needs of the displaced are overlooked.

The broader issue that struck me was our myopia in thinking of health in silos. We don't think of displaced or stateless people as having cancer, diabetes or needing palliative care. We have a caricatures of what their health looks like —malaria, disease outbreaks, injury — thinking their health needs are different. We've created these barriers that lead to more problems than solution. Think about IDPs [internally displaced people] or refugees from Gaza – we may not think of them having, say, diabetes. But where does someone go to have blood sugar tested in those circumstances?

You talk a lot about trust in your book. Can you talk about what that means when it comes to health care?

What I mean by trust is that oftentimes communities that are displaced may or may not seek health care, not because it's not always available but because they have very good reason to distrust the system. So you can imagine, if there is a sense that the hospital care is going to be dictated by people who are xenophobic or there is going to be somebody who is going to report them to the police or deport them, then they would not necessarily seek that resource.

You and I go to a doctor whom we trust is going to be good. Health care is such an intimate thing, such a deeply personal thing, that you really want this to be something that is built on individual trust and also institutional trust.

Can you give an example of the role trust plays when it comes to health care?

Take Henry [a clergyman and health-care worker in South Sudan]. His congregation trusted him. In the middle of COVID, it was he who gave them information of what to do and how to navigate it. You might not listen to a government directive or message on your phone, but people whom you trust have tremendous role in how you respond.

Personally, I was moved when Henry himself had a stroke. He's reasonably well-connected and it was very hard to get treatment. [He did eventually get the resources to get treatment in Khartoum, Sudan.] But it struck me that the [displaced] people can help [each other] but only if they're healthy. When they get sick or leave, whatever thin system they've worked in starts to collapse.

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Gisele Grayson
Gisele Grayson is a deputy editor on NPR's science desk. She edits stories about climate, the environment, space, and about basic research in biology and physics.