“I am getting this wonderful education. I have a job. I fit in. At the same time, I feel at any moment that can change. I don’t think that most Americans live with that thought that anything can change [in] just one minute… My biggest fear is me getting deported or DACA being terminated and I go back to being here illegally.” –“Leticia”
“Leticia,” a pseudonym, is now 21. She came to the U.S. from Mexico at the age of eight. She is just one of the many undocumented young adults we have met in the course of our research.
With President Donald Trump’s reversal of an Obama-era executive order known as Deferred Action for Childhood Arrivals (DACA), Leticia’s worst fears seem to be coming true. It is now up to Congress to pass legislation that would grant “Dreamers” legal status. In the meantime, these youths’ dreams and aspirations are once again stalled, with another deadline and six more months of uncertainty, and thus, fear and anxiety.
Together, we have been researching the lives of immigrants for 26 years. Up until 2012, undocumented youth like Leticia found themselves with few options for making their aspirations a reality as they became adults.
This changed with DACA. The program granted certain undocumented youth temporary reprieve from deportation that could be renewed every two years, and identity papers such as driver’s licenses and social security cards. This gave recipients the ability to legally apply for a job or admission into institutions of higher education.
Since DACA passed, youth like Leticia have been able to further their education and obtain jobs and health insurance along with being granted many other rights. Our research demonstrates that DACA has enabled youth and young adults not just to work toward building their own futures, but also to find peace of mind – something that, until then, was unfamiliar to them.
Personal trauma and emotional well-being
Participants in our studies commonly discussed chronic feelings of sadness and worry. Their mental health statuses were precarious prior to DACA. Most did not know they were undocumented until a caregiver told them, usually in late adolescence. To them, finding out about their undocumented status proved to be a source of personal trauma. Their status disrupted their dreams and eroded the trust they had placed in their families, friends and social institutions.
Some participants admitted that, prior to DACA, they had thought about suicide. Feeling hopelessness because of their undocumented status, a few had harmed themselves or even attempted suicide. According to news reports, at least one young Dreamer ended his own life as a result of this anguish.
We found that one way that undocumented youth coped with feelings of isolation was to join immigrant organizations and to volunteer in immigrant advocacy activities. The social connections they developed in these groups fostered relationships that supported them in times of despair.
Then, DACA brought relief and improved their mental health. These youth shared with us that they were more motivated and happy after Obama’s executive order. As Kate, one of our participants, told us, DACA “has gone a long way to give me some sense of security and stability that I haven’t had in a very long time.” Even with DACA, these youth maintained their involvement in organizations to help “give back” to their communities.
Almost 800,000 youth trusted the government with their “fingerprints” and other personal information when they applied for DACA. In return, the two-year reprieve from deportation lifted the constant, everyday fear of existence that characterized their lives. These mental health gains, in addition to the fruits of all of their hard work over the past five years, are now threatened.
The road ahead
These young adults are thoroughly vetted and are either well on their way to or already contributing in significant ways to their communities and the country. Alonso Guillen, to cite just one recent example, lost his life while rescuing victims of Hurricane Harvey. Many have contributed to the U.S. economy – 5.5 percent of DACA recipients have started their own businesses and 87 percent are employed.
With the demise of DACA, these youth may feel that the trust they placed in government has been betrayed. In our research, before Donald Trump was a presidential candidate, we often heard participants expressing fear that DACA may be temporary – but it was always hypothetical. One of our participants, “Mariposa,” said she was “on the list,” and worried that the U.S. government would know exactly where to find her if DACA should end.
If our research and the history of social activism of Dreamers tells us one thing, it is that these youth are resilient. The U.S. is their home, the only place they consider home, and where they want to stay and contribute.
Our work shows that being part of organizations that support immigrants is crucial to promoting a sense of social and emotional well-being. These organizations, at least, may continue to provide spaces where youth can come together and feel like they belong. Meanwhile, Dreamers can only hope Congress can find a solution that will help them trust once again in America’s institutions.
When someone is sick or needs the help of a physician, who should decide what is appropriate – what blood tests and imaging studies to order, what medicines to prescribe, what surgeries to perform? Should it be the doctor, the patient or some combination of the two? Most people nowadays (even most physicians) support what is called ‘shared decision-making’, in which the doctor and patient (and often her family or friends) discuss the situation and come up with a joint plan. The doctor’s role is that of experienced guide, whose medical knowledge, skill and expertise help to shape the conversation and whose understanding of the priorities, values and goals of the patients steers the plan in a given direction to the satisfaction of all.
Unfortunately, in the real world, things don’t always work this way. Doctors and patients have a number of masters, both welcomed and uninvited. Insurance companies or other third-party payers often intrude into the decision-making process, limiting the choices of what services and products might be available: a sick patient often must wait for pre-authorisation for expensive diagnostic tests and procedures; pharmacy formularies restrict the kinds of drugs available for prescriptions, and so on. Furthermore, some doctors have personal interests in the interventions they recommend. Many surgeons make more money if they do more surgery, cardiologists earn more if they put in more cardiac stents and pacemakers, and drug companies have better profits if they sell drugs for chronic conditions that never get better and require lifelong medication (such as high cholesterol, hypertension and diabetes). Such practices contribute to the seeming inexorable rise in healthcare costs (and a host of adverse outcomes) in the United States.
Yet controlling cost without sacrificing quality has been a daunting task. One strategy might be to pay more attention to what patients need, and less to what they want, assuming that the two don’t overlap. Another is limiting the excess of doctors who prescribe because of conflicts of interest or acts of ‘defensive medicine’ – in other words, to protect themselves from lawsuits, not aid the patient.
How does one go about rationing care? Will faceless bureaucrats be denying granny her medication or access to an intensive-care unit solely because she’s old, or saying that Billy can’t get his conditions treated because he is disabled? Indeed, dread of rationing – as well as a healthy dose of old-fashioned fear-mongering by crafty politicians – is what inspired the meme of ‘death panels’, an unfounded canard based upon a misinterpretation of a proposed federal rule for Medicare. Nevertheless, the concept of rationing is still of concern because it implies restriction of a resource that could be beneficial.
Therefore, rationing doesn’t apply to interventions that can’t help anyone at any time – for instance, antibacterial antibiotics that won’t work because the patient has a viral infection. A better example of true rationing is the allocation of organs – such as livers, hearts and lungs – for transplantation. Organ transplantation requires rationing because the supply never keeps up with demand. We also ration drugs that can suddenly become scarce (a distressingly common problem).
But there are other forms of rationing that are problematic, too. The most common one, intrinsic to the US healthcare system, involves limiting the kind and amount of healthcare one can obtain based on one’s financial situation. Poorer people get less and worse healthcare than wealthy people. While the most offensive aspects of this arrangement have been mitigated to some extent in those states that expanded Medicaid under the auspices of the Affordable Care Act, there are still alarming numbers of Americans who have limited access to effective medical care. This is one of the chief reasons why the US population as a whole doesn’t get as much bang per buck as citizens of many other nations, and this form of rationing is blatantly unfair.
But there is another form of rationing that is more insidious still. This is the so-called bedside rationing, in which doctors decide, on an individual per-patient basis, what should be available to them, regardless of the range of services that their insurance or finances might otherwise allow. The problem with this is that it is readily susceptible to prejudice and discrimination, both overt and hidden. It is well-known that doctors, like pretty much everyone else, harbour so-called implicit biases that are readily revealed on the implicit-association test (available online).
This does not mean that physicians express overt sexism, racism, or others forms of bigotry – but rather that these unconscious beliefs about others can influence the kinds of treatments that they offer. Thus, bedside rationing can violate one of the cardinal principles of fairness – that clinically similar situations be treated similarly. So doctors could offer one patient (say, a well-off white person) with unstable angina and blocked coronary arteries the standard of care with cardiac catheterisation and stents, while offering just medical therapy to an African-American patient with comparable disease. And there is ample evidence that such differential treatment occurs.
So how does one ‘choose wisely’ and escape the moral pitfalls of bedside rationing? It turns out that this is an extraordinarily difficult to do, especially in a system such as ours where physicians have such discretionary power about what diagnostic and treatment interventions should be on the ‘menu’ for each patient. This can readily lead to too much and too little offered to patients for reasons that cannot be easily justified.
I think that the solution, at least in the US, might require a wholesale re-engineering of our healthcare system to minimise the financial incentives to overprescribe, and to protect or immunise against the biases that lead to inappropriate rationing at the bedside. The only way to reduce the frequency of these behaviours is to have a single-payer system that controls (to a certain extent) the availability of certain interventions, analogous to the way in which the organ-transplant system regulates who gets transplanted and under what circumstances.
Of course, unlike livers and hearts, what needs to be rationed in the US is money and what it can buy. We could save money by efficiencies of scale and decreasing the waste and administrative costs that contribute at least 25 per cent of the total cost of what we now spend. Can we totally eliminate ‘bad’ rationing? No, of course not. But Americans should do all they can to avoid the moral tragedy of being the wealthiest nation on Earth that chooses dumbly, not wisely, about healthcare.
This article was originally published at Aeon and has been republished under Creative Commons.
But the day before, even more people – 43 – were shot to death in cities and towns around the country. And nobody really seemed to notice.
Shootings kill more than 36,000 Americans each year. Every day, 90 deaths and 200 injuries are caused by gun violence. Unlike terrorist acts, the everyday gun violence that impacts our communities is accepted as a way of life.
As public health scholars who study firearm violence, we believe that our country is unique in its acceptance of gun violence. Although death by firearms in America is a public health crisis, it is a crisis that legislators accept as a societal norm. Some have suggested it is due to the fact that it is blacks and not whites who are the predominant victims, and our data support this striking disparity.
Urban and racial disparities
Within the United States, the odds of dying from firearm homicide are much higher for Americans who reside in cities. Twenty percent of all firearm homicides in the U.S. occur in the country’s 25 largest cities, even though they contain just over one-tenth of the U.S. population. Data from the Centers for Disease Control and Prevention show that of the 12,979 firearm homicides in 2015, 81 percent occurred in urban areas.
There is even more to the story: CDC data also show that within our nation’s cities, black Americans are, on average, eight times more likely to be killed by firearms than those who are white. The rate of death by gun homicide for black people exceeds those among whites in all 50 states, but there is tremendous variation in the magnitude of this disparity. In 2015, a black person living in Wisconsin was 26 times more likely to be fatally shot than a white person in that state. At the same time, a black person in Arizona was “only” 3.2 times more likely than a white person to be killed by a gun. The combination of being black and living in an urban area is even more deadly. In 2015, the black homicide rate for urban areas in Missouri was higher than the total death rate from any cause in New York state.
These differences across states occur primarily because the gap between levels of disadvantage among white and black Americans differs sharply by state. For example, Wisconsin – the state with the highest disparity between black and white firearm homicide rates – has the second-highest gap of any state between black and white incarceration rates, and the second-highest gap between black and white unemployment rates. Racial disparities in advantage translate into racial disparities in firearm violence victimization.
Americans are 128 times more likely to be killed in everyday gun violence than by any act of international terrorism. And a black person living in an urban area is almost 500 times more likely to be killed by everyday gun violence than by terrorism. From a public health perspective, efforts to combat firearm violence need to be every bit as strong as those to fight terrorism.
The first step in treating the epidemic of firearm violence is declaring that the everyday gun violence that is devastating the nation is unacceptable. Mass shootings and terrorist attacks should not be the only incidents of violence that awaken Americans to the threats to our freedom and spur politicians to action.
Condado, San Juan, Puerto Rico.(Photo by Sgt. Jose Ahiram Diaz-Ramos/PRNG-PAO)
I’ve always been fascinated by storms, particularly Puerto Rico’s own history of them. I think it’s because I was born in September 1960 during Hurricane Donna. In its wake, that storm left more than 100 dead in Humacao, the city where I am now a special collections librarian at the University of Puerto Rico.
In 1990, Israel Matos, the National Weather Service Forecast Officer in San Juan, told me that, “The tropics are unpredictable.” That comment only increased my interest in storms. Now, with the people of Puerto Rico still reeling from Hurricane Maria more than a month after it hit the island, his words seem prescient.
Today I have – if not the honor, then the duty – to describe, firsthand, what it is to live through the aftermath of the worst storm of this brutal hurricane season.
Since the storm I haven’t been able to go to work at the library on the Humacao campus. At 88,000 square feet and three stories, the biblioteca is the biggest building on campus, and it’s among the worst damaged by Maria.
It’s mold-infested and the roof is leaking, so there’s a lot of work to be done in both repairs and cleaning before students can use it. The mold has gotten into our collection – from books and papers to magazines – and most of the furniture and computers will have to be replaced.
According to the general damage report for the University of Puerto Rico, the infrastructure in all 11 campuses of the university system suffered severe losses.
The Humacao campus, located on the island’s eastern side, was the hardest hit, with damages calculated at more than US$35 million. Classes will start again on Oct. 31.
Five weeks after Hurricane Maria, all the campuses have now reissued their academic calendars and classes are resuming, though in some places the first semester will run through January to make up for lost time.
A culture of catastrophe
Starting on Sept. 20, 2017, Hurricane Maria swamped Puerto Rico with 20 inches of rain and battered it with 150 mph winds for over 30 hours.
The resulting humanitarian crisis has been widely reported worldwide: 80 percent of the island is still without electricity and there is not enough drinking water.
Communications – radio, television, telephones and internet – are now recovering slowly, after weeks of near nonexistence. Having said that, it took me more than two weeks just to write this article, between finding somewhere to charge my laptop and locating an internet connection strong enough to research the data and send a file by email. Eventually I discovered a Starbucks near my house with both electricity and Wi-Fi. Nothing is easy.
What outsiders are unable to see, perhaps, is that an entire culture has arisen around the catastrophe caused by Hurricane Maria – one with typically catastrophic traits: material scarcity, emotional trauma, economic catastrophe, environmental devastation.
Puerto Ricans are now facing a dramatically different way of life, which means our relatives and friends in the diaspora are, too.
Nothing about life resembles anything close to normal. An estimated 100,000 homes and buildings were demolished in the storm, and 90 percent of the island’s infrastructure is damaged or destroyed. Not only are there shortages of water and electricity but also of food, highways, bridges, security forces and medical facilities.
It’s dangerous to venture outside at night. An island-wide curfew was lifted last week, but without streetlights, stoplights or police, driving and walking are dangerous after dark.
The official tally of missing people varies, with police tallies ranging from 60 to 80 right now. Considering Puerto Rico’s hazardous conditions and limited health care services, that number is sure to rise. We are well aware that epidemic diseases, including leptospirosis and cholera, could come next. Health concerns are further stoked by the delays and disarray of the various federal agencies tasked with handling this emergency.
A deep uncertainty looms over our futures. There is post-traumatic stress involved in surviving in an overwhelming situation like this, so as a people we’re now waking up to that psychological pain, too.
The outlook from here
In short, Hurricane Maria has changed the modern history of Puerto Rico. For those who, like me, are curious about such things, the last storm of this caliber was San Felipe II, in 1928.
Known in the U.S. as the Great Okeechobee Hurricane, that massive storm was so destructive that it basically plunged Puerto Rico and Florida into the Great Depression a year before the rest of the country.
In some ways, though, Puerto Ricans are well prepared for these challenges, for the history of the island is one of uncertainty and trouble.
Puerto Rico has never had a sovereign government. Instead, it has always been bound to some other larger and more powerful state. First it was Spain, which colonized our territory in 1508.
Then, since the 1898 invasion, it’s been the United States, a country with which Puerto Rico enjoys a tricky political relationship. That’s very clear right now, as the Trump administration wavers in coming to our aid.
Mired in uncertainty
Even before the hurricane arrived, Puerto Rico was facing uncertainty around another major challenge: bankruptcy. Considering lost pensions, jobs and savings, the real financial costs surely exceed by billions the official sum of $123 billion in unpaid government debt.
Hurricane Maria has deepened this economic crisis, creating a ripple effect that touches everyone across all levels of society.
Everyone is mired in uncertainty. What is the solution to this cascading set of problems? How long will recovery take? What could actually make life better for us? What will we miss? Will anything ever be the same?
The sky is more visible now. Houses once hidden are exposed, and we discern entire communities that that we rarely saw before.
There’s graffiti popping up across the island, written by someone identified as “JC,” who reminds Puerto Ricans, as a kind of consolation, that “Behind the trees live a lot of people.”
Just as new environments are created in areas opened up by the hurricane, with trees and plants sprouting afresh, over time we’ll find that our current uncertainties also fade and transform. A brand new way of life is emerging among all Puerto Ricans – those who stayed, those who left, their relatives and their friends.
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In the face of these threats, which Marvel superhero might be best equipped to defend the people, ideals and institutions under attack? Some comic fans and critics are pointing to Kamala Khan, the new Ms. Marvel.
Khan, the brainchild of comic writer G. Willow Wilson and editor Sana Amanat, is a revamp of the classic Ms. Marvel character (originally named Carol Danvers and created in 1968). First introduced in early 2014, Khan is a Muslim, Pakistani-American teenager who fights crime in Jersey City and occasionally teams up with the Avengers.
Since Donald Trump’s inauguration, fans have created images of Khan tearing up a photo of the president, punching him (evoking a famous 1941 cover of Captain America punching Hitler) and grieving in her room. But the new Ms. Marvel’s significance extends beyond symbolism.
In Kamala Khan, Wilson and Amanat have created a superhero whose patriotism and contributions to Jersey City emerge because of her Muslim heritage, not despite it. She challenges the assumptions many Americans have about Muslims and is a radical departure from how the media tend to depict Muslim-Americans. She shows how Muslim-Americans and immigrants are not forces that threaten communities – as some would argue – but are people who can strengthen and preserve them.
After inhaling a mysterious gas, Kamala Khan discovers she can stretch, enlarge, shrink and otherwise manipulate her body. Like many superheroes, she chooses to keep her identity a secret. She selects the Ms. Marvel moniker in homage to the first Ms. Marvel, Carol Danvers, who has since given up the name in favor of becoming Captain Marvel. Khan cites her family’s safety and her desire to lead a normal life, while also fearing that “the NSA will wiretap our mosque or something.”
As she wrestles with her newfound powers, her parents grow concerned about broken curfews and send her to the local imam for counseling. Rather than reinforcing her parents’ curfew or prying the truth from Khan, though, Sheikh Abdullah says, “I am asking you for something more difficult. If you insist on pursuing this thing you will not tell me about, do it with the qualities benefiting an upright young woman: courage, strength, honesty, compassion and self-respect.”
Her experience at the mosque becomes an important step on her journey to superheroism. Sheikh Abdullah contributes to her education, as does Wolverine. Islam is not a restrictive force in her story. Instead, the religion models for Khan many of the traits she needs in order to become an effective superhero. When her mother learns the truth about why her daughter is sneaking out, she “thank[s] God for having raised a righteous child.”
The comics paint an accurate portrait of Jersey City. Her brother Aamir is a committed Salafi (a conservative and sometimes controversial branch of Sunni Islam) and member of his university’s Muslim Student Association. Her best friend and occasional love interest, Bruno, works at a corner store and comes from Italian roots. The city’s diversity helps Kamala as she learns to be a more effective superhero. But it also rescues her from being a stand-in for all Muslim-American or Jersey City experiences.
Fighting a ‘war on terror culture’
Kamala’s brown skin and costume – self-fashioned from an old burkini – point to Marvel Comics’ desire to diversify its roster of superheroes (as well as writers and artists). As creator Sana Amanat explained on “Late Night With Seth Meyers” last month, representation is a powerful thing, especially in comics. It matters when readers who feel marginalized can see people like themselves performing heroic acts.
As one of 3.3 million Muslim-Americans, Khan flips the script on what Moustafa Bayoumi, author of “This Muslim American Life,” calls a “war on terror culture” that sees Muslim-Americans “not as complex human being[s] but only as purveyor[s] of possible future violence.”
Bayoumi’s book echoes other studies that detail the heightened suspicion and racial profiling Muslim-Americans have faced since 9/11, whether it’s in the workplace or interactions with the police. Each time there’s been a high-profile terrorist attack, these experiences, coupled with hate crimes and speech, intensify. Political rhetoric – like Donald Trump’s proposal to have a Muslim registry or his lie that thousands of Muslims cheered from Jersey City rooftops after the Twin Towers fell – only fans the flames.
Scholars of media psychology see this suspicion fostered, in part, by negative representations of Muslims in both news media outlets and popular culture, where they are depicted as bloodthirsty terrorists or slavish informants to a non-Muslim hero.
These stereotypes are so entrenched that a single positive Muslim character cannot counteract their effects. In fact, some point to the dangers of “balanced” representations, arguing that confronting stereotypes with wholly positive images only enforces a simplistic division between “good” and “bad” Muslims.
Kamala Khan, however, signals an important development in cultural representations of Muslim-Americans. It’s not just because she is a powerful superhero instead of a terrorist. It’s because she is, at the same time, a clumsy teenager who makes a mountain of mistakes while trying to balance her abilities, school, friends and family. And it’s because Wilson surrounds Kamala with a diverse assortment of characters who demonstrate the array of heroic (and not-so-heroic) actions people can take.
For example, in one of Ms. Marvel’s most powerful narrative arcs, a planet attacks New York, leading to destruction eerily reminiscent of 9/11. Kamala works to protect Jersey City while realizing that her world has changed – and will change – irrevocably.
Carol Danvers appears to fill Kamala in on the gravity of the situation, telling her, “The fate of the world is out of your hands. It always was. But your fate – what you decide to do right now – is still up to you … Today is the day you stand up.” Kamala connects the talk with Sheikh Abdullah’s lectures about the value of one’s deeds, once again linking her superhero and religious training to rise to the occasion. In both cases, the lectures teach Kamala to take a stand to protect her community.
Arriving at the high school gym now serving as a safe haven for Jersey City residents, Kamala realizes her friends and classmates have been inspired by her heroism. They safely transport their neighbors to the gym while outfitting the space with water, food, dance parties and even a “non-denominational, non-judgmental prayer area.” The community response prompts Kamala to realize that “even if things are profoundly not okay, at least we’re not okay together. And even if we don’t always get along, we’re still connected by something you can’t break. Something there isn’t even a word for. Something … beautiful.”
Kamala Khan is precisely the hero America needs today, but not because of a bat sign in the sky or any single definitive image. She is, above all, committed to the idea that every member of her faith, her generation, and her city has value and that their lives should be respected and protected. She demonstrates that the most heroic action is to face even the most despair-inducing challenges of the world head on while standing up for – and empowering – every vulnerable neighbor, classmate or stranger. She shows us how diverse representation can transform into action and organization that connect whole communities “by something you can’t break.”