Recognizing the humanity, remembering the person

Recognizing the humanity, remembering the person

Treating patients as more than problems 'dying' for a solution

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We forget about people. In the midst of pain, in the ugliness of suffering — we have lost the person.

Cancer has a face, and cancer patients all have a story.

It’s a grandmother, a mother, a wife, a sister, an aunt, a cousin, a daughter.

It’s a person — a living, breathing, feeling human.  

It’s not always a happy ending, but that does not mean we get to skip to the end of the stories we choose to listen to. There is something to be learned — no matter what the outcome may be. Through the pain, we can heal — together — using grief as a guide out of the darkness.

Together — they are all survivors and should be treated as such. No matter how a person chooses to handle their illness, their disease, their pain — their story — it is up to everyone to see that they are treated professionally, but with sympathy and passion.

They must be treated as people.

Victoria Amy Stern Whelan was a sister, a wife, a mother, a cousin, a daughter, and an actress.

Joseph Stern

Victoria was a cancer patient, and her story lives on.

“Leukemia’s not going to get me,” Victoria said, putting on a brave face for her brother Joseph Stern, M.D.

After years of not speaking to her family and pushing away visitors, Victoria decided to let her older brother — a neurosurgeon — travel across the country to see her during treatment at City of Hope, a cancer hospital in Los Angeles, California.

A doctor, Joseph was used to scrubbing his hands before entering restricted areas. Joseph should have been used to wearing gloves and gowns. Only this time, it was different. Joseph was going to see his kid sister — the patient.

“As I entered her hospital room for the first time, I was afraid I would disappoint her,” Joseph wrote in an article for The New York Times. “…But Victoria and I grinned at each other through our masks, and her eyes twinkled with the pleasure of a long-anticipated reunion.”

Cancer.gov/ City of Hope

Stripped of his physician’s status, Joseph was forced into the world of pain, grief, vulnerability, and support as he sat with his sister day after day.

“I was aware of the consuming and unrelenting fear that patients carry with them and cannot shake,” Joseph wrote. “I was no longer the doctor dropping in on rounds, calling the shots.”

Victoria refused to discuss her mortality with anyone — “it was off the table.” So, she decided to “conquer whatever the medical team asked of her.”

“Sitting with Victoria allowed me to reconnect with a part of myself I had been suppressing for years,” Joseph wrote. “Her courage rubbed off on me. …I went to City of Hope to support my sister, and what I found there was gratitude: appreciation for others; reveling in small pleasures we usually take for granted, like a hot shower, sunlight, a walk outdoors. Victoria’s gift was a tangible lesson, something I have been able to carry with me. Now I approach patients differently than I did before her illness.”

Without this pain, without Victoria’s life and death, Joseph would not have been able to treat Meghan White, a 34-year old woman with breast cancer that had spread to her brain, as more than a patient.

Like Victoria, Meghan was battling cancer; however, her humanness was not lost amidst the tests, the poking, the prodding.

WFMY NEWS

Rather than see her as a victim, Joseph saw her as a survivor.

“Previously, I would have thought nothing of her shaved head, but now I understood Meghan had a story to tell,” Joseph wrote. “As they were with Victoria, the odds were long against her.”

Meghan: a daughter, a fourth-grade teacher — who taught more than just her students.

“I never used to cry when speaking with patients,” Joseph wrote. “I would gird myself, push forward, distract myself with new and pressing problems to fix; I focused on technical, rather than human, matters. Now, I told Meghan that I would cry for us both. My sister was present in that room, in the patient sitting before me and in the way I was newly able to comfort and reassure her. …My sister showed me how to become a better brother and, at the same time, a better doctor.”

We all can and should strive to be better.

TEDxAtlanta

There is power in pain, and there is more power in acknowledging pain exists. There is power in treating people as more than problems in need of a solution.

Dr. Rita Charon, originator of the burgeoning field of narrative medicine, believes it is necessary for doctors to see their patients are more than problems dying for a solution.

“This is not a dream,” Charon said. “This is real.”

Sharing her story of treating patients with audiences, Charon urges for the merging of humanity, science, medical care, and technology — the abstract and concrete.

Charon spends her days working in a hospital where she can tell what is wrong with someone as soon as they get off the elevator; however, she argues that doctors must see beyond the “fixable” and learn how to “see beyond the bleeding and the seizing.”

“We need to see the complex, lived experience,” Charon said. “If we do not, we miss the very reasons they come to us.”

Joseph Stern learned how to treat patients and see beyond the problem. While his sister did not want to share her story on her own, Stern was able to carry on a legacy of care and understanding through his work.

Amazon

Black, lesbian, mother, warrior, poet Audre Lorde took another approach to her cancer — being silent was not an option, so she gave voice to her thoughts, her pain, her deepest emotions through her writing. 

“It is not my intention to judge the woman who has chosen the path of prosthesis, of silence and invisibility, the woman who wishes to be ‘the same as before.’ She has survived on another kind of courage, and she is not alone,” Lorde wrote (The Cancer Journals, 8). “Each of us struggles daily with the pressures of conformity and the loneliness of difference from which those choices seem to offer escape. I only know that those choices do not work for me, nor for other women who, not without fear, have survived cancer by scrutinizing its meaning within our lives, and by attempting to integrate this crisis into useful strengths for change.”

Although Lorde’s experience with cancer was not without its pain, her work begs for the need to recognize each person’s humanity.

Regardless of how pain is dealt with, it cannot be ignored.

Pain touches us all in some way, but that does not mean we should ignore it, stigmatize it, or pretend it’s not there.

Pain is felt — by people — and ignoring it doesn’t change the fact that there is someone on the other end of that suffering.

And by treating people like problems, only more pain and suffering is created — wrecking more and more havoc as we forget theirs and our own humanity — out of convenience. 

Family Values at Work

There is not much to learn from cancer. The learning must be through those who fight it.

Through their teachings, we must learn how to be humans again, how to feel again.

Then, we will learn how to heal again.

Their pain matters. Their stories matter. Listen. Remember.

Course reading: Lorde, Audre. The Cancer Journals. Aunt Lute Books, 2006.

Quantifying 'survival' : A Woman's Right to Choose

 Quantifying 'survival' : A Woman's Right to Choose

Oregon election could decide abortion rights for all states & all women

Shawn Thew, European Press photo Agency

 

Megan Chambers, 30, lives in Portland, Oregon — “the north star of reproductive rights.”

When Chambers was 27, she was trapped in an abusive marriage and was the mother of two young children. Chambers was also expecting a third child; however, she did not want to be pregnant.

ACLU of Oregon

A Medicaid patient, Chambers made a decision — a decision she said she has never had second thoughts about. A choice that cost Chambers nothing out of pocket — a result of living in a state that is considered “the most progressive state on abortion rights” in the United States.

Chambers had an abortion.

“I had done the emotional and physical labor of parenting two kids … So I chose myself and my children,” Chambers said.

Chambers knows the cost of motherhood, but anti-abortion groups and Oregon lawmakers are trying to speak for mothers across the entire state. They are trying to take away Chambers’s ability to choose, and if they succeed, women in Oregon, who rely on tax dollars to pay for their healthcare, will be stripped of their freedom to choose.

Chambers’s story is not valued by Michigan political officials and anti-abortion groups, but her medical bill is.

If abortion rights are taken away in this “liberal utopia,” what is protecting women everywhere from being subject to the same kind of decision making, leaving them powerless over their own bodies.

“Anti-abortion groups could use this as a rallying cry to go after other states and ultimately reopen the debate on Roe vs. Wade, allowing the now Conservative-leaning Supreme Court to overturn a law that’s stood since 1973,” writes Lindsay Schnell, USA Today reporter.

In Oregon, this topic has been politicized and is being framed as an economic debate. Anti-abortion group members are proposing an amendment to the Oregon constitution, Measure 106, a change that will eliminate elective abortions for anyone who relies on state-funded health insurance.

It’s one of three anti-abortion measures before voters this November in the latest effort to dramatically limit abortion access in America,” Schnell reports. “West Virginia and Alabama, two typically red states are also voting on anti-abortion initiatives.”

Oregon Live

This debate is not new. 

Issues surrounding reproductive rights are simply being reframed. For years, politicians and organizations have tried to dictate a woman’s right to choose how she controls her body — specifically women who rely on government-funded programs and who are considered to be low-income individuals.

The neo-Malthusian movement promoted the idea of eugenics, a type of thinking that ranks the reproduction of select groups as being more “valuable” and “worthy” (Takeshita, 9) compared to others.

When officials and neo-Malthusians were worried about the “population boom” (12), they took matters into their own hands by convincing the World Health Organization to take on family planning as a program and established the United Nations Population Fund (11). 

United Nations, Contraceptive Use

 

The irony: these individuals were not looking at women as people. Instead, they saw them as a threat; however, not all women were viewed as a threat. Low-income, minorities became the targets of free IUDs, abortion kits, and other methods of birth control in the global South. While members of the global South were given these technologies, they were not informed of the damage they would do to their bodies.

Birth control and other methods of contraceptives then grew to be seen as weapons used “to fight these battles” of overpopulation, poverty, the cold war, and a potential communist takeover (Takeshita 12).

Women have become part of the problem, and officials have turned birth control into their controller — not women’s. Decisions were economically motivated and turned birth control into a masculine issue and economic discussion, and sadly, not much has changed today.

The debate in Oregon is driven by economic arguments, creating a “backdoor ban on abortion” as Measure 106 proponents have targeted the state’s poorest residents — people who will have to pay $400 to $600 out of their own pocket for abortion procedures, according to ABC News.  

“In many ways, Oregon is the North Star when it comes to reproductive rights and abortion access, and if we, in this election, were to lose, it would be incredibly emboldening to the anti-abortion movement,” said Grayson Dempsey, executive director of NARAL Pro-Choice Oregon. “It’s really scary to me to know that we have one of the most serious threats to abortion in Oregon in my lifetime.”

Yes on Measure 106

Much like women in the global South, voters in Oregon are not being properly educated about the implications of Measure 106. While voters were not in favor of a similar proposal in 1978 and 1986, this year, their economic side is being appealed to.

“Those supporting the measure say it’s not an attack on abortion but an attempt to give Oregon residents a say in how their tax dollars are spend after years with no referendums on the issue,” writes Gillian Flaccus, Associated Press reporter.

Instead of seeing people, people are being seen as dollar signs.

Megan Chambers is not a threat. Chambers is a human being, a person — a woman with a story, but her story is being ignored by groups motivated by economic, religious, and chauvinistic agendas.

Patricia Ramirez/The Inquisitor

Chambers is one in about 3,600 women who had abortions last year, amounting to $2 million.

3,600 women who had the opportunity to make a choice without having to worry about cost.

“They’re choosing survival,” Chambers said. 

A person’s right to choose cannot be quantified.  

Relevant course reading: 

Takeshita, Chikako. The Global Biopolitics of the IUD: How Science Constructs Contraceptive Users and Women's Bodies. The MIT Press, 2012.

When Does the Persecution End?

When Does the Persecution End?

The need to humanize refugees' never-ending abuse and desperation

Aris Messinis/Agence France-Presse — Getty Images

Michael Tamba is a survivor.

After enduring torture in the Congo and a risky boat ride from Turkey, Tamba reached sanctuary on the Greek island of Lesbos, home of Europe’s biggest refugee camp — Camp Moria — Tamba’s most traumatic experience yet.

Tamba is one of 9,000 refugees living in Camp Moria, an island with enough space to accommodate 3,100 people. 

After spending almost a year at Camp Moria, Tamba attempted to commit suicide by drinking a bottle of bleach; however, due to its crowded population, he was discovered and treated by aid workers.

“Eleven months in Moria, Moria, Moria,” Tamba said. “It’s very traumatic.”

Tamba is a survivor, but he is not alone. Life in Camp Moria is even worse for women, who experience an abuse that is all-encompassing and inescapable.

Mauricio Lima for The New York Times

The New York Times interviewed a female refugee who came to Camp Moria from Afghanistan. She fled her abusive husband and asked reporters not to print her name for fear of being found by her husband who tried to kill her — the reason why she sought asylum. Nameless, the woman is one of many who are desperately trying to survive on the island’s camp.

Before arriving to Moria, the woman said she was sold to a smuggler and was then imprisoned in a room with no light, no food, and where she was raped for a week. It’s hard to imaging, but the article says when she came to the refugee camp, “things got worse.”

“I wanted to kill myself when I saw the situation,” she said.

Tamba, the unnamed woman, and all 9,000 refugees trapped in Camp Moria are survivors — survivors who have survived long enough. They need help — adequate and much-needed help.  

Mauricio Lima for The New York Times

One refugee said she and the other refugees "are not seen as humans," and that must change in order for real action to occur.

Unfortunately, this problem is not new, but it is time refugees’ voices were heard.

Despite the “hardened” attitudes countries have developed towards refugees, we must realize refugees are people too, and in order to realize this, we must hear from them directly.

There is power in narrative, lived experiences, and personal memories, and in order to call attention to this problem, mainstream media must call attention to this abuse of power as well as hold nation’s accountable for their actions. By letting refugees tell their stories, we are giving them back their voice, something they have been stripped of for far too long, and through this process, real change can occur.

By hearing their stories and seeing the pain they suffer each and every day, people can connect and sympathize with refugees, realizing that they are in fact, real people trying to create a better life and willing to die in order to do so.

Like the New York Times article, Anne Firth Murray gives women a voice and helps humanize them in From Outrage to Courage: Women Taking Action for Health and Justice. We need more narratives like these in order to call attention to the harsh realities of refugee camps and make the public care.  

Murray writes, “The often crowded conditions, compounded by a lack of access to safe drinking water, poor sanitation, inadequate or nonexistent medical facilities, and the degraded health of the refugees can make the camp an unhealthy place to live” (146).

Credit Petros Gianna kouris/Associated Press

In Camp Moria, the overcrowded camp leaves refugees waiting in line for 12 hours a day for moldy food. There are about 80 people per shower and 70 per toilet, according to the New York Times.

If the terror refugees experience in their home countries and the danger they face while migrating isn’t enough, surviving refugees are met with even more hardships once they reach these supposed “sanctuaries” like Camp Moria. Once refugees reach camps, they are not guaranteed safety.

Thousands of refugees are drowned out by powerful figures who prioritize their own citizens rather than helping those who risk their lives to try and create a better life for themselves and their families.

As wars consume Afghanistan, Iraq, Turkey, and Syria, civilians are forced to flee their homes in fear and desperation. Countries, like the United States and the European Union, have implemented stricter migration laws to put a cap on the amount of refugees who seek asylum at their borders.

On Monday, September 17, 2018, United States President Donald Trump announced his plan to cap the number of refugees that can be relocated to the United States next year at 30,000 — the lowest cap a president has placed on refugee programs since 1980.

Elaborate and unrealistic application processes have been created in order to further deter and prolong those residing in camps from being moved to other locations throughout the European Union.

Camp residents are left feeling “trapped in an endlessly bureaucratic asylum application process that they do not fully understand.”

Daphne Tolis for NPR

In 2015, the European Union was struggling to handle the mass amounts of refugees seeking asylum, but on March 18, 2016, an agreement with Turkey and the EU was created with the hope of easing its migrant crisis. As of then, refugees taking routes from Turkey were to be “sent back.” Refugees already residing in Greek camps have the potential to be moved, but only if they jump through the endless legal hoops to complete their application process, and even then, there is no guarantee.

“Sexual assaults, knife attacks and suicide attempts are common,” writes Patrick Kingsley, a New York Times international correspondent. “Few residents feel safe. … Sexual violence is also common. The International Rescue Committee has assessed over 70 people since March who have reported being sexually abused at (Camp Moria). Women say they are wary of walking alone through the camp at night.”

Joanna Kakissis for NPR

Women are forced to endure “gender-specific forms of violence” while residing in refugee camps as they are the “invisible” (Murray 147) individuals who are left out of plans to ensure their safety. Their bodies are abused and taken advantage of as they are raped, forcibly impregnated, and left without access to proper care and protection.

At Camp Moria, another unnamed and essentially “invisible” woman said she was walking back to her tent at night and found herself lost. As she was trying to find her way, a man grabbed her from behind and raped her.

The nameless woman reported the attack to the police, but she was sent back to the camp, and no action was taken to find her assailant.

“I wanted to kill myself,” she said.

One of the most heartbreaking aspects of their stories — refugees remain hopeful for a better future, but judging by the current efforts to help, all they have is hope. 

Isaac Hielo, a refugee from Eritrea, watched his family die from AIDS. He is now residing in Camp Moria. Despite his circumstances, he still hopes for a better future.

“You’re thinking about the future,” Hielo said. “Tomorrow is another day, yes?”

Mauricio Lima for The New York Times

As they wait, refugees imagine a day where they are no longer surviving. 

That day is now. They've waited long enough. 

Refugees, no matter their reason for leaving, are seeking opportunity, freedom — they are looking for a fair chance at survival. 

It is time we hear their stories.

They are warriors. They have suffered enough. 

They are humans, and it is time they are treated as such.

It is time they are given a fair chance to live and do more than just survive. 

Relevant course reading: Murray, Anne Firth. From Outrage to Courage: Women Taking Action for Health and Justice. Common Courage Press, 2008.

Denial doesn't help & being stuck in the past is not an excuse

Denial doesn't do anything

Being stuck in the past is not an excuse

Why school curriculum should include more than abstinence

Erin Schaff for The New York Times

For a man who loves to tweet, United States President Donald Trump is not trending with the latest hashtag to take social media by storm — #WhyIDidntReport. 

But, Trump is not alone when it comes to keeping up with the times and engaging in conversation around sexual assault — countless numbers of political figures are stuck in the past when it comes to consent and respecting women.

Christine Blasey Ford (New York Times)

Christine Blasey Ford has accused Trump’s Supreme Court nominee of sexual assault, and while some have chosen to believe and support Blasey, others question her credibility and wonder why she waited years to come forward. But, there is another question circling around Blasey’s accusation:

Should a man be judged by past, teenage actions? 

(New York Times)

Social media hashtags that have been turned into movements have created an opportunity for dialogue in accessible ways, but discourses like this have happened before. Collective efforts like Our Bodies Ourselves serve as sources to educate people on proper behavior and etiquette when it comes to sexuality and intercourse.

Which brings another question to the table: Would these issues still be issues if consent was taught to children and teenagers? Would these accusations be brushed off if talking about sexuality was not a taboo subject?

Justice is important, but the first step to create social change is to start a conversation, and to get the ball rolling, public discourse — even when uncomfortable — is necessary to assure a brighter, better, and more accepting future for all.

In the United States, incidents of sexual assault, abuse, and harassment appear in headlines everyday, but no legal steps have been taken to address these issues. Instead, survivors’ voices have been tuned out by people in power who have failed to listen to their lived experiences.

Trump doubts Blasey’s story, tweeting that he does not doubt “if the attack on Dr. Ford was as bad as she says, charges would have been immediately filed with local Law Enforcement Authorities by either her or her loving parents.”

Some media outlets dispute Blasey’s accusations by saying she is politically motivated or mentally unstable. Political officials like Utah Sen. Orrin Hatch have insinuated a “mistake” in Blasey’s recounts of the assault.

Kavanaugh claims he has never assaulted or disrespected a woman, his high school yearbook page tells another story — a tale of drinking, football, parties, and sexual conquests as he labels himself a “Renate Alumnius” 

(New York Times)

While some men have decided to stand by their man Kavanaugh, countless women have taken to social media to tell their stories, and teenagers have spoken out about their frustrations with officials who have decided to brush off these harsh allegations as they too recognize the “double standard” regarding men and women.

Conversations need to happen — conversations that involve both boys and girls in order to put an end to this misogynistic, disbelieving culture.

When the country is governed by accused, how does someone come forward and voice their disapproval? Who do they go to? 

 Credit Justin T. Gellerson for The New York Times

Two of Kavanaugh’s classmates from Georgetown Preparatory School told New York Times reporters that Kavanaugh and his classmates were not shy when it came to “boasting about their (sexual) conquests.”

“They were very disrespectful, at least verbally, with Renate,” said Sean Hagan, a Georgetown Prep student at the same time as Kavanaugh.

Hagan goes on to voice his “disgust” with his classmates — “then and now.”

Hagan did not voice his opinion against his classmates’ behavior “then” because it was not the norm — it was part of the culture. A culture that is credited with governing American democracy today.

Public officials appear in headlines each day — headlines that preview a story of sexual assault accusations. For something that happens everyday, there has been no follow through in order to try and remedy the issue of sexual assault and harassment.

By teaching consent and talking about sexuality, boys and girls will have a better understanding of “right and wrong,” something that gets lost in curriculum that are dependent on “abstinence only” sexual education courses and others where intercourse is not mentioned at all. 

Women should not be the only people to care about this issue. It is not a women's issue, it is a human issue, and something must be done in order to address and fix this problem. 

Credit Brendan Smialowski/Agence France-Presse — Getty Images

Although the news cycle is crowded with stories of sexual assault and the accused going free, there is hope. Students have begun to voice their critiques of government officials who refute accusations by simply denying them as a whole.

In a story by The New York Times, high school student Dan Radka, 17, said his female friends were the ones to teach him about the importance of consent, also saying that teachers have instructed students on the importance of being mindful of what one posts online, a place “where youthful posts can live forever.”

Radka said the controversy surrounding Kavanaugh and other Washington D.C. officials has made him think thoughtfully about his choices, “knowing they may well impact his future.”

“I don’t want to do something dumb that I could have prevented,” Radka said.

Credit Erin Schaff for The New York Times

Today, conversations around sexual assault are ignored by public officials who were not exposed to open attitudes toward sexuality, so in order for steps to be taken to address this issue, discussions are crucial.

Rather than shying away from the topic and ignoring survivors’ stories, action must be taken in order to start a conversation and work toward social change, starting with educational institutions and school curriculum.  

Nobody can go back in time and take back their choices, but ignoring and denying the problem is not going to fix the issue either.

The solution: Conversation. Education. Acknowledgement. Collaboration.