Helping ME Helps All of US

Imagine for a moment that one day you wake up feeling like you have an extreme case of the flu. After a month, it hasn’t gone away and your health seems to be in a downward spiral. Your body becomes weaker and weaker. You wake up every day exhausted after a full night’s sleep. After even small tasks like walking downstairs to eat breakfast, your body becomes even more tired. You develop pain in your muscles and joints and often get too dizzy when sitting or standing up. Suddenly the foods you have eaten your whole life are giving you horrible allergic reactions. Smells, bright light, and sound all trigger migraine headaches. You go in to see your doctor and he says that he can’t pinpoint what is physically wrong with you. You have missed so much work that you lose your job. Your friends and family cannot understand why you are suddenly unable to spend time with them. This unimaginably difficult scenario  is the reality for the 2.5 million Americans currently living with ME/CFS.

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a chronic illness that affects between 1 and 2.5 million people in the US, and an estimated 17-24 million people worldwide. In comparison, ME/CFS affects nearly twice as many Americans as HIV/AIDS (1.2 Million). (1,3) This figure becomes even more staggering when according to a large-scale Danish study, patients with ME/CFS have the worst quality of life when compared with every other chronic illness including every cancer, heart attack, stroke, ulcers, multiple sclerosis, and diabetes. (Falk et al.) In Dr. Katrina Berne’s book Chronic Fatigue Syndrome, Fibromyalgia and Other Invisible Illnesses: The Comprehensive Guide, she recounts a 1995 congressional briefing in which Dr. Mark Loveless testified that “a CFS patient feels every day effectively the same as an AIDS patient feels two months before death.” (Berne)

The main physical symptoms of ME/CFS include post-exertional malaise, unrefreshing sleep and other sleep problems, widespread chronic pain, joint pain, muscle pain, sore throat, difficulty maintaining upright posture, IBS, and migraines. The main mental and emotional symptoms are cognitive dysfunction, depression, and anxiety. These symptoms are also accompanied by an acute sensitivity to light, sound, smells, foods, medications, and odors. (About the Disease) Any exertion whether it be physical, mental, or emotional can cause symptoms to flare up and become worse. ME/CFS can affect anyone of any age, sex, or race but is most common in women of childbearing age (approximately 15-44 years). Up to 89% of people with ME/CFS lost their job due to their illness, and 69% are unemployed.(SMCI Infographic)  Almost 90% of ME/CFS patients are women. (Faro et al.) It is obvious that this suffering must be alleviated in any way possible, yet in 2014 the US government spent $2 per patient on ME/CFS research, and $2450 on HIV/AIDS research, while ME/CFS still has almost twice as many cases as HIV/AIDS. (SMCI Infographic)  The gross underfunding of ME/CFS research and resources in the United States is a huge injustice, and the federal government urgently needs to allocate more funds to help ME/CFS patients.

The three main ways that ME/CFS patients would benefit the most from government funding are: 1) research, 2) patient needs, and 3) practitioner education and awareness. Funding research would include research into both the possible causes or triggers of ME/CFS and for the innovation of new drugs that would be able to treat ME/CFS. It would also include clinical trials of drugs that already exist, but specifically focusing these trials on patients with ME/CFS. Currently, there has been only one trial for Valcyte, an antiviral that many experts believe could be helpful for patients with elevated levels of Epstein-Barr Virus (EBV) and other Herpes-class viruses including HSV1, HSV2, and HHV6. Patient needs would include bolstering direct financial support for social security and Medicaid to compensate for the massive loss of productivity and employment due directly to ME/CFS. Practitioner education and awareness would consist of educating current doctors about ME/CFS as well as encouraging medical schools to integrate ME/CFS into their curriculum.

One of the most important ways that the government needs to support ME/CFS patients is by funding practitioner education and awareness. Approximately 90% of people living with ME/CFS are undiagnosed. (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) This is mainly because many doctors remain unaware of ME/CFS; due to this lack of practitioner awareness many patients are told that their symptoms are “in their head” because there is no one specific lab test to diagnose them. Most doctors do not know or understand what ME/CFS is, even though the CDC first officially recognized CFS as a neurological disorder almost thirty years ago, many practitioners still believe the falsehoods that it is due to deconditioning, mental illness, or is that it is simply psychosomatic.

Even the doctors that do believe that ME/CFS is a legitimate illness often do not know or understand proper courses of treatment. Many of the treatments suggested by governing bodies such as NICE, the UK’s National Institute for Health and Care Excellence, promote ineffective and dangerous treatments for ME/CFS. (Kindlon) Some of these treatments include Graded Exercise Therapy (GET) and Cognitive Behavioral Therapy (CBT). While these are not recommended by US governing bodies, many doctors still attempt to treat the disease with these outdated and dangerous treatment options. There are currently no FDA-approved drugs or treatments for ME/CFS despite the millions of people suffering from this condition. The Center for Disease Control has one page dedicated to treatment guidelines for ME/CFS that essentially states that there is no good treatment and that treatment consists only of treating symptoms that are most bothersome to the individual patient. This also means that many major insurance companies will not cover treatments that are overwhelmingly accepted by ME/CFS experts. Also, the CDC suggests seeing a different specialist for each symptom (pain, sleep problems, orthostatic intolerance) which can be helpful, but can also be difficult when doctors do not communicate, especially when many specialists do not understand the disease at all. (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome)

Discrimination in the medical field against female patients contributes greatly to the roadblocks faced by ME/CFS patients. While it may seem like these instances are just individual experiences, it is important to understand that there are millions of individual patients in the US, and as many as 24 million people suffering worldwide. These experiences are important because they are not just had by one person, but are almost universal with ME/CFS patients.

The under-funding and poor understanding of ME/CFS research and resources should be considered an urgent feminist issue. Because 90% of ME/CFS patients are women, many patients are thought to be exaggerating their symptoms. From the first stages of the onset of their illness, patients are often met with excessive barriers to getting the care they need and deserve. Sadly, women in the United States often face many additional barriers to proper treatment for chronic illnesses. In the 2011 Institute of Medicine report Relieving Pain in America: A Blueprint for Transforming Prevention, Care, Education, and Research, women are more likely to suffer from chronic pain syndromes, including CFS, fibromyalgia, and endometriosis. Additionally, more likely to be misdiagnosed, and delayed in being correctly diagnosed. They are also more likely to face “improper and unproven treatments, gender bias, stigma, and ‘neglect, dismissal and discrimination’ from the health care system (Campaign to End Chronic Pain in Women, 2010, p. 4).” Women were more likely to have chronic pain but also more likely to be mistreated for it.

Women are not getting the medical care they need and deserve because of discrimination. The same 2011 Institute of Medicine report says  “Women experience disparities in pain care…Women with these conditions have faced not only severe pain, but also misdiagnoses, delays in correct diagnosis, improper and unproven treatments, gender bias, stigma, and ‘neglect, dismissal and discrimination’ from the health care system.” (Institute of Medicine) Pain is one of the most recognized symptoms in ME/CFS patients. Patients experience muscle pain, joint pain, migraine headaches, and are at an increased risk for gynecological pain disorders. This is very real, chronic pain, but because the seriousness of ME/CFS is downplayed by many physicians, these patients cannot get the treatment they need and feel devalued in the process. In a 2014 survey conducted by the National Pain Report, over 90% of women with chronic pain feel that they are discriminated against by the healthcare system because of their gender. In the same survey, 84% feel they have been treated differently by doctors because of their sex, and 65% feel doctors take their pain less seriously because they are female. (Anson)

There is a large gender disparity in the way that drugs are tested and understood. Most drugs approved by the FDA were specifically tested by and for males. For a number of reasons, females have often been excluded from participating in clinical trials of drugs. In 1993, the National Institutes of Health established guidelines for inclusion of women and minorities in clinical research. (National Institute of Health Staff) In 2017, the NIH updated their policy to indicate that any differences in reactions to drugs in women, racial minorities, and ethnic minorities need to be identified in clinical trials. (National Institute of Health Staff) This is a big step forward, but does not fix the fact that older drugs that have different reactions and side effects in males and females are not particularly well understood by doctors, patients, or companies.

Moreover, drugs whose patents have expired may have new uses but are not being studied because they are no longer profitable. For example, Low Dose Naltrexone is sometimes prescribed to ME/CFS patients, as well as patients with various autoimmune disorders. Naltrexone was originally intended for people who were dealing with opiate addiction, but at very low doses has been found helpful for healing some patients with autoimmune pain and symptoms.  However, there is only anecdotal evidence to suggest it actually helps patients because there is not funding for new studies. The older drugs that were approved by the FDA before 1993 may not have needed to include female participants even if the majority of people using the drug today are female.

Under our current healthcare system, pharmaceutical companies are relying on the drugs that will generate the greatest profit, not necessarily which drugs will help the most people. Studies for developing new drugs for ME/CFS treatment are few and far between because they rely heavily on private funding from nonprofit organizations and university research centers. Currently, new drugs are developed in different stages with funding from state governments, private foundations, pharmaceutical companies, or venture capitalists, with some support from government sources like the National Institute of Health. (Wizemann et al.) With diseases like ME/CFS, that may not be rare, but little is known about them, the monetary return on investment for pharmaceutical companies may not seem worth the risk. This lack of innovation for people suffering from this disease is detrimental to those individuals and for our society as a whole.

The economic burden of ME/CFS in the United States is an estimated $17-24 billion loss from medical expenses and lost productivity due to patients being too sick to work. (SMCI Infographic) This is only the annual cost, while many patients remain ill for decades. The individual economic costs are divided into two main categories: direct and indirect medical costs. Average annual expenditures per patient were found to be $9,436, and lost productivity totaled $9.1 billion. (Jason et al.) The combination of lost household income with an average of $9,436 in additional medical expenses puts patients and their families in a very bad position. $9.1 billion in lost productivity poses a huge risk for the US economy, especially as many of these are young people who should be healthy and productive members of society. This is a significant economic incentive to find a viable treatment and cure for ME/CFS. Dr. Berne asserts in Chronic Fatigue Syndrome, Fibromyalgia and Other Invisible Illnesses: The Comprehensive Guide that “by afflicting those in their most productive years, CFS presents a serious threat to the nation’s workforce. The loss of workers, the mounting medical expenses, the increasing number of disability cases, and cumulative disability payments from Social Security and private insurers are potentially devastating to our national economy.” This is not a reason to not fund disability payments, but rather should be a national reason to want to find treatments and cures for patients so that they can return to productive lives. Patients do not want to have to live off of disability forever, they want to not be disabled and they want their lives back.

There is a big gap between the needs patients have and the government meeting those needs. Funding must to be allocated to patient needs. ME/CFS is not listed by name on Social Security’s website as a condition eligible for Social Security, but they do have a brief guide to applying as someone disabled by ME/CFS. Even when claimants should be granted Social Security Disability benefits, most are denied. Even the process to just find out you have been denied can take years. Similarly, state-by-state variations are met with bureaucratic difficulties in getting Medicaid. Many normal functions such as cooking, cleaning, bathing, and dressing are impaired and many patients need someone to take care of them full time. This means that any financial assistance programs to help with the costs of living and medical expenses are helpful to patients.

In addition to the previously discussed funding, legislation surrounding healthcare is also imperative for patients. Currently, there are class action lawsuits against insurance companies for denying necessary care to patients with autoimmune and related illnesses without even trying to understand why certain treatments may be effective. ME/CFS patients are being robbed of their personal, professional, and physical lives. Their lives can get put on hold completely, often for decades at a time. The fact that there is such little government support is a huge injustice for patients and society as a whole. It is unjust that patients have to deal with a largely untreatable and incurable disease that has the worst quality of life of any chronic illness. It is unjust that we live in a society that is complicit in this suffering, and it is unjust that the wealthiest country in the world is not funding research for such a widespread and devastating disease.

Works Cited

  • “About the Disease.” Solvecfs.org, The Solve ME/CFS Initiative, 2018, solvecfs.org/about-the-disease/.
  • Berne, Katrina. Chronic Fatigue Syndrome, Fibromyalgia, and Other Invisible Illnesses: The Comprehensive Guide. Hunter House, 2001.
  • Falk, M, et al. “The Health-Related Quality of Life for Patients with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS).” PLOS One, vol. 10, no. 7, 6 July 2015, http://www.ncbi.nlm.nih.gov/pubmed/26147503.
  • Faro, Manica, et al. “Gender Differences in Chronic Fatigue Syndrome.” Reumatologia Clinica (English Edition), vol. 12, no. 2, 12 Apr. 2016, pp. 72–77., doi:10.1016/j.reumae.2015.05.009.
  • “How Many People Have ME/CFS?” American ME and CFS Society, 27 June 2016, ammes.org/how-many-people-have-mecfs/.
  • Institute of Medicine (US) Committee on Advancing Pain Research, Care, and Education. Washington (DC). Relieving Pain in America: a Blueprint for Transforming Prevention, Care, Education, and Research. National Academies Press, 2011, http://www.ncbi.nlm.nih.gov/books/NBK92516/.
  • Jason, Leonard A, et al. “The Economic Impact of ME/CFS: Individual and Societal Costs.” Dynamic Medicine, vol. 7, no. 1, 2008, p. 6. US National Library of Medicine National Institutes of Health, doi:10.1186/1476-5918-7-6.
  • Johnson, Cort. “Is Chronic Fatigue Syndrome (ME/CFS) an Autoimmune Disorder?” Phoenix Rising, 2 June 2012, phoenixrising.me/archives/6190.
  • Johnson, Cort. “Major Stanford Study Indicates Chronic Fatigue Syndrome (ME/CFS) Is Inflammatory Disorder.” Simmaron Research, Simmaron Research, 11 Aug. 2017, simmaronresearch.com/2017/08/major-stanford-study-indicates-chronic-fatigue-syndrome-mecfs-is-inflammatory-disorder/.
  • Kindlon, Tom. “Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.” Bulletin of the IACFS/ME: A Quarterly Publication of the International Association for CFS/ME, vol. 19, no. 2, 2011, pp. 59–111., iacfsme.org/PDFS/Reporting-of-Harms-Associated-with-GET-and-CBT-in.aspx+.
  • “Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.” Centers for Disease Control and Prevention, Centers for Disease Control and Prevention, 3 July 2017, http://www.cdc.gov/me-cfs/about/index.html.
  • “SMCI Infographic.” Solvecfs.org, Solve ME/CFS Initiative, Dec. 2017, solvecfs.org/wp-content/uploads/2018/01/SMCI_infographic-Dec2017.pdf.
  • National Institute of Health Staff. “NIH Policy and Guidelines on The Inclusion of Women and Minorities as Subjects in Clinical Research.” NIH Policy and Guidelines on The
  • Inclusion of Women and Minorities as Subjects in Clinical Research, U.S. Department of Health and Human Services, 28 Nov. 2017. grants.nih.gov/grants/funding/women_min/guidelines.htm.
  • Wizemann, Theresa M., et al. Breakthrough Business Models: Drug Development for Rare and Neglected Diseases and Individualized Therapies: Workshop Summary. National Academies Press, 2009, www.ncbi.nlm.National Institute of Health Staff.gov/books/NBK50972/.
  • “Women in Pain Report Significant Gender Bias.” Edited by Pat Anson, National Pain Report, National Pain Report, 8 Nov. 2015, nationalpainreport.com/women-in-pain-report-significant-gender-bias-8824696.html.

Teen Gets Suspended from School for Swearing at his Congressman

According to CNN, Nevada teen Noah Christensen called his congressman’s office to demand gun control. Chistiansen told the staff of his Representative Mark Amodei (R) to “get off their fu*king asses” and pass gun-control laws. Later, the office of Mark Amodei called Christiansen’s high school and had him suspended for using foul language.

First of all, why does the office of a Congressional Representative seemingly not have the time of day to pass gun control laws, but does have the time to call a constituent’s high school and have him suspended for using adult language? If there is a time to use “foul” language with your representative, it is surely at a time when your own life (and of students across the nation) are in jeopardy because our represenatives refuse to pass gun control. Why is a grown man so insecure that he is threatened by language used by a teenager? I guess Representative Mark Amodei isn’t as excited about personal liberties as he claims.

Secondly, it is in clear violation of Christiansen’s First Amendment rights to be suspended for any language used outside of school. All citizens have freedom of speech protected by the First Amendment. This does not mean anyone can say anything they want without backlash, but does mean that the government (ex: Christiansen’s public high school) cannot punish him for his speech while outside of school. There is clear precendent that says that even in school, students do not lose their constitutional rights when they enter school grounds. Students are allowed to protest government action under freedom of expression and free speech rights even at school.

The ACLU is already involved in the case, and is planning to take legal action. For now, Christiansen has lots of support from all over the country from people, including myself, who both stand by what he said and his right to say it.

#NationalWalkOut

The National Walk Out last week was by and large a huge success that showed how Generation Z are active and political, who won’t be complicit in injustice. Students across the country protested school shootings and gun violence, as well as called for gun control laws across the nation. Since the walkout, there has already been another shooting in Maryland. Even with protests across my voting district (CA House District 45), Republican Congressional Representative Mimi Walters has offered no viable solutions or gun control support.  It is clear that her loyalty lies with her party above her consituents and the concerns for student safety in her district. Along with other Republicans in Congress, Mimi and her party have shown time and time again that they value corporations above the health and safety of our nation.

This weekend, March for Our Lives will be hosting more ptotests across the nation demaning that “their lives and safety become a priority and that we end this epidemic of mass school shootings.”

Many of these students pre-registered to vote in upcoming elections, which is the biggest movement for young voter turnout in recent years.  Generation Z just may be our saving grace for gun control as a nation.

Mrs. Maisel Really is Marvelous

Amazon’s new comedy The Marvelous Mrs. Maisel is the perfect blend of feminism, dirty comedy, and 1950s period piece. The show centers around Mrs. Midge Maisel (Rachel Brosnahan), a brilliant and gutsy Upper West Side housewife in 1958 who becomes a stand-up comedian when her husband leaves her for his secretary. Throughout the show, Midge wakes up to the reality that things aren’t fair for women, especially single women. tumblr_p2ctdcll0b1tu1beso1_1280.jpgThe show is written by one of my favorite screenwriters, Amy Sherman-Palladino, the writer of Gilmore Girls and Bunheads.

 

The show also explores the difficulties for women in comedy. As a woman in comedy, we’ve come a long way since 1958, but we’ve got a long way to go. Many of the problems Midge faces in the show still ring true today. Women are still held to ridiculous double standards that men will never have to face. For example, one episode deals with another female comedian who pretends to be fat, ugly, and poor when she’s none of those. She pretends to be substantially less than she is because otherwise men wouldn’t find her funny. I’ve found the same thing to be true a lot of the time throughout my life. If men feel at all threatened by you, they won’t find you funny or likable. I mean, that’s a larger problem with their own

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insecurity, but is still often an issue in one of the most progressive cities in the country. I’ve found that men also write off comedy that they don’t understand, especially when it comes to women’s comedy. My favorite satire site, Reductress, is a parody of women’s magazines. As a satire writer and editor, I think their site is purely brilliant and much-needed. However, many men write it off as insignificant because they don’t get it. I found when I was writing satire that a lot of my pitches that were funny only to all of the women in the room didn’t get published very often.

 

Does the Electoral College Still Have a Purpose?

The electoral college was at its core created because the Founding Fathers thought that people would probably not actually know much about the candidates they were voting for. Hundreds of years ago, it was assumed that it was not likely that voters would be informed of the candidates, However, a lot has changed in the past few hundred years. The internet has made it near-impossible to not know and understand who the candidates are, their stances, and parties.

I’d argue that the current function of the electoral college is mainly voter suppression. While it isn’t actively trying to suppress voters on the coasts, it is a more passive way to say “our hands are tied” when the votes of swing states or votes in less populous states hold significantly more power than those in states like New York or California.

For example, each electoral vote in California and New York represents over 500,000 people, while in Wyoming one electoral vote represents about 140,000 people. These states where votes are worth less tend to be extremely populous, coastal states. They tend to be more racially diverse and more politically liberal. To put things into perspective, the state of Wyoming has a population of 573,720, but the city of Los Angeles has 3.976 million people. Just one coastal city has almost seven times the population of the smallest state.

In the past 20 years, two presidents have lost the popular vote and still ended up as presidents. In 2000, George W. Bush lost the popular vote to Al Gore but still won the electoral college. In 2016, Trump lost the popular vote by over 2.8 million votes to Hillary Rodham Clinton but still won the electoral college. Both of these candidates that won were conservative Republicans, and that is no surprise considering the system is rigged against diverse, populous states. The US wonders why voter turnout is so low, but our system is fundamentally unequal and broken.

Misogyny in Medical Practice

Discrimination against women in almost every facet of life is well-documented, and healthcare is no exception. As someone dealing with multiple chronic illnesses, I’ve had firsthand experience with doctors telling me that my very real illnesses are all in my head. Before it happened, I thought this was only common in conservative areas or with unqualified doctors. But for me, these were top doctors at renowned hospitals in Orange County. The Huffington Post article Is There a Gender Bias Against Female Pain stated:

“Brenda Unhajer, a nurse from Pennsylvania, told Healthline, “From the other side of the bed, I can tell you there is a gender bias in healthcare. In an acute versus chronic situation, many women having acute chest pain are often overlooked and given anti-anxiety medications before receiving treatment, or in addition to, being worked up for a cardiac problem.”

Interestingly enough, before I was diagnosed with an autonomic nervous system disorder, I was told by multiple doctors that I was just having anxiety, which I had never experienced before. My doctor told me that seeing a therapist would help, but sure enough, my body continued to keep getting worse.  Last year, I had a serious and complicated kidney infection but the ER doctors who examined me determined that my pain did not seem nearly bad enough and decided that I was just constipated. According to an article in The Atlantic titled How Doctors Take Women’s Pain Less Seriously

Nationwide, men wait an average of 49 minutes before receiving an analgesic for acute abdominal pain. Women wait an average of 65 minutes for the same thing. Rachel waited somewhere between 90 minutes and two hours.”

It is frustrating, but sadly not surprising, that in 2018 medical professionals routinely discount women’s pain, and assume that we are exaggerating our pain, even when data shows the exact opposite is true.

Public Intellectual: Matty Healy

Public intellectuals in 2018 look vastly different than they have in the past. People are noticing the world has changed around us, and that to be someone whose only contribution is thinking without action or creation is mainly empty rhetoric– which is not what our country or world needs at this point. So yes, in a sense the traditional “public intellectual” who only writes about intellect in his books or journals is mainly dead along with print media. However, the niche has been filled with other sorts of people: artists, thinkers, and inspirerers for Millennials and Gen Zers. As Stephen Mack wrote in The ‘Decline’ of Public Intellectuals, “That is, our notions of the public intellectual need to focus less on who or what a public intellectual is—and by extension, the qualifications for getting and keeping the title. Instead, we need to be more concerned with the work public intellectuals must do, irrespective of who happens to be doing it.” Public intellectuals in our current day and age are the people leading movements in a language that young people understand and want to hear. They are people creating music, podcasts, interviews, art, film, and with those media, changing the way that people think about and interact with the world around them.

Millennials and Generation Z are by no means anti-intellectual. In fact, we are actively seeking out these intellectual figures who may not be traditional political or religious figures. As Steven Mack wrote in Wicked Paradox: The Cleric as Public Intellectual

“If there’s any truth to the old adage that religion and …politics don’t mix, it isn’t because they are polar opposites…Rather, it’s because they are, more or less, alienated kindred vying for the same space in the human imagination. It is not difficult to see why: religious experience and democratic politics make overlapping—and often competing—claims to the deepest meanings we attach to our humanity.”

In this decade, that niche for public intellectuals has been filled by artists and activists more than by traditional politicians or the clergy. Young people want these figures, but history speaks for itself in showing the flaws in traditional power systems. Millennials and Gen Xers do not want to put blind faith in organized religion or government. Young people want to look to role models that encourage their own critical thought and analysis, rather than buying into dogma that has been handed down to them. We are looking for movements like intersectional feminism, Black Lives Matter, #MeToo, and #TimesUp that are focusing more on the sides of the oppressed, rather than the oppressors. We are looking for movements and logic that are inclusive, and by seeing the flaws in movements past, seek to learn and grow from them. Everyone has already heard the tired rhetoric that people in power have been arguing about for hundreds of years; young people like myself are asking far more of the intellectuals we look to today. We are looking for realistic, flawed people with thought-provoking ideas that are radically inclusive.

This new age of twenty-first century public intellectuals are expected to be be skeptical and critical of larger power institutions and systems– unlike their forbearers who were either part of or proponents of the accepted systems such as Neoliberalism, unrestricted capitalism, or Christianity, but may have been calling for smaller changes to the system at large. A public intellectual is inherently a critical thinker. This new generation of free-thinkers largely do not support the current power system or power dynamics in our world. Additionally, the new intellectuals are increasingly global– they largely identify more as global citizens than as only citizens to their own country. We want intellectuals who are dynamic, not dogmatic.

Matty Healy, the frontman, writer, and art director for The 1975, is a perfect example for this new category of public intellectuals. As an artist he explores themes of social

Image result for matty the 1975 mtv gif
Matty Healy, frontman of The 1975    Source: MTV

commentary, religious (or lack thereof) ideology, post-ironic culture, and social issues. Outside of his art, he has become a sociopolitical icon among teens and young adults. He dabbles in social satire in the video  for Love Me, a song from their most recent album I like it when you sleep, for you are so beautiful yet so unaware of it. During interviews, he often discusses philosophy, traditional literature, and critical theories. Matty is changing the way that many young people think about and interact with the world around them through his art, live performances, and interviews.All of this, he does with incredible self-awareness and irony. On the ILIWYS tour, each show opened up with the song Love Me, a very tongue in cheek song on many levels. As the lights go on, the crowd goes wild while Healy actively asks them to “love me if that’s what you wanna do.” The ILIWYS record was created intentionally with the idea that they could not fear being seen as pretentious. In a 2016 interview with music magazine, NME, Matty said about the second record

“It’s not about anything apart from our pursuit of excellence and the pursuit of our truths… and it’s about being a bit pretentious. Not pretentious for the sake of wanting to be perceived as slightly more intelligent than you are, but we take our art very very seriously and we don’t take ourselves that seriously…but I think that people are too scared to be perceived as being too passionate or being too involved and I wanted to make a record that doesn’t come from any of those places and is absurd at times.”

In the past, NME had given The 1975 their 2014 “Worst Band” award and then in 2017 their “Best Live Band” award. This is the sort of shift that they had widely been dealing with from “serious” music journalists, from criticizing the band to applauding them once they became more popular. A large portion of the record is intentionally poking fun at either the band themselves or is playful social commentary in a comedic way.

One of their most tongue in cheek moments is the video for one of the singles, The Sound.

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Clip from The Sound video, with the band inside of the box and the critics outside

It was so self-aware that they directly used the criticisms for the first record in the video, which dropped a few hours before the full album was released. In the video, the band plays exaggerated versions of themselves, inside of a box being watched by highbrow critics. The band did this because their first album and singles had been given such scathing reviews from many music journalists.

The song Loving Someone from The 1975’s second record has become an anthem for the LGBTQ community, as well as a critique of Capitalism’s agenda of profiting off of teens’ insecurities and vulnerability. Additionally, proceeds of all Loving Someone merchandise with the Pride flag on it went to the It Gets Better Project. Thus, the band’s concerts have become a haven of solidarity for LGBTQ youth– Healy is regularly given Pride flags from fans during shows. In this way, political and artistic movements have become largely intertwined. Even in concert, the set and lighting during the song is designed to look like the Pride flag. In Pride marches around the world, fans even made their own Pride flags with the words “Loving Someone” written on them.

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The lighting design for Loving Someone

Additionally, during many concerts, Healy talked about the similarities between Brexit and the 2016 presidential election with the possibility of the, in his words, “fucked up situation,” of having Trump become president before playing the song Loving Someone. He discussed political activism at concerts and performances at festivals like Reading & Leeds, Coachella, and Glastonbury.

On both records, he writes about his personal struggles and desire to have the religious faith that he lacks. In interviews, Matty often says that he “envies the faithful” in the way that he has a deep want and need for faith that he cannot find. I think that this is an increasingly common phenomenon among young people, especially considering that one third of people under thirty are unaffiliated with any particular religion. Additionally, 14% of American Christians left their church by mid-November 2016 during the election cycle.

In the songs Antichrist and If I Believe You he laments that although he still seeks something more, he remains an atheist because Christianity is inherently flawed in its theology and dogma. Both songs are also sonically-influenced by gospel music.Image result for the 1975 neon sign If I Believe You is Healy crying out, asking God to fix the “God-shaped hole” in his heart. Live, this song is a spiritual experience for many fans who relate to this complex struggle with faith. In Antichrist, a song from their self-titled album, Healy discusses his issues with many ideals in Christianity. The song follows the story of Matty in the future speaking to his wife who is struggling with belief in God, “She said, ‘How can I relate to somebody who doesn’t speak? I feel like I’m just treading water. Is it the same for you?’” She is asking him if he feels the same, that God has just been silent and impersonal. Later in the song “Blood is on your tongue as well as your hands, archaic and content you just wash them off.” He is talking about the way that many people perceive hypocritical Christians, who seem to be content with not seeing or seeking to understand the repercussions of their religion. This sort of dialogue with listeners influences the way they think and understand these kind of soul-level issues and what it means to understand the human condition.

Additionally, Healy has revolutionized the way that many people are thinking about the blurred line of what we now consider reality. In this past two years, the band had been on tour almost nonstop since the release of I like it when you sleep, for you are so beautiful yet so unaware of it in February 2016 until November 2017, playing more than 150 shows. Since 2010, they have actually played the most amount of shows of any artist globally, and according to NME, the “distance band travelled would take them two-thirds of way to moon.”

On the tours for I like it when you sleep, for you are so beautiful yet so unaware of it, the way that the sets and lighting were set up was a completely new kind of experience for fans. The set was created in order to blur the line between actually being at the show live, and watching it through a screen through Instagram Live. The set was engineered to look almost as stunning and striking through a phone camera as it was to look in person. In the industry, this was the first of its kind and has since influenced the production and lighting design for artists like John Mayer and Halsey. The set was created in a new format so that the resolution of the stage would translate beautifully into the inevitable online collective memory on social media.

The 1975’s aesthetic has deeply influenced online aesthetic culture. The pink color used in their pink era for the ILIWYS album has been deemed “millennial pink” and now everything from clothing to cosmetics to entire walls (for photographing of course) can be found in that color.

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My friend Lauren and me at The 1975’s LA pop up shop in 2016

The band’s obsession with neon signs and album art created an entire subculture of people, first their fans, then Instagram users as a whole, to seek out interesting neon signs. This influence then translated to the “real world” with every trendy bar, restaurant or club creating their own neon signs for people to take photos of and post online.The band even created some of the first ever pop-up shops in Los Angeles and London, where they sell band merch, as well as give fans a “Tumblr irl” experience complete with neon signs from the album art. This back-and-forth trend between the digital and physical world has become increasingly blurred and The 1975’s artistic vision has played a key part in that.

Additionally, the show itself was created to look almost as though it had been edited like a video beforehand. It’s sort of like the blending between traditional live TV and movies: TV was on live and movies could be reshot and cut before the audience would ever see it. By just playing with lighting, some of the songs in the live show made the band appear to be in black and white, as though we are watching them through a pre-prepared instagram filter in our own eyes.

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A photo I took of the song “fallingforyou” at The Shrine 4/19/16

Some of the transitions between songs and sets also make it appear that the stage itself is inside of a TV screen such as the opening transition between songs The 1975 and Love Me, as well as between Robbers and Girls (below). 

At the beginning, the screen goes from static into the first song, and the end closes with the screen going back to static. The show itself was created to be an art installation in itself, as well as each song being a smaller piece of the art.

In 2018, it is more important than ever that young people have talented artists-turned-intellectual-figures that we can support not only for their art, but for their political and ideological views. Matty Healy is an exemplary public intellectual figure, and he also expects that his fans, while at face value may be written off as fan girls, are intelligent and understand the depth of his art and ideas. Especially in a world where problematic ideology is no longer being tolerated, art cannot be divorced from the artist. This understanding between artists and fans creates a much deeper and meaningful connection between them. Online fandoms are extremely popular on Instagram, Facebook, Twitter, and Tumblr and give fans a very personal connection to one another. Personally, I have experienced The 1975’s live shows in both large and small venues, and it is a truly unique and inspiring concert experience.

Iconic Duo: Grace and Frankie

**There are a few minor SPOILERS in this post

Season 4 of Netflix’s Grace and Frankie shows the support and optimism in female friendships. 2018 is the perfect time to release this optimistic dramedy about Grace and Frankie — two women in their seventies who support each other through personal, professional, and romantic endeavors. Grace (Jane Fonda) is the ever responsible and work-centric business woman, while Frankie (Lily Tomlin) is a quirky artist and activist. In season 3, they start a business selling sex toys for older women. They love and support each other through break ups, family trouble, and through their individual quests to find who they are as individuals after their husbands leave them for each other. 

Grace and Frankie is the best depiction of female friendship since Sex and The City, and might even have that one beat. This modern-day look at women like Frankie who were a huge part of Feminism in the 1960s and 70s in 2018 is both fascinating and encouraging. Especially considering they laid out the groundwork for Third-Wave Feminism of today. Seeing a woman like Grace, who is pretty conservative in most respects, but had to fight an uphill battle during her career is an interesting insight into the lives of so many women like her.

This depiction of women loving each other as opposites and individuals is so important because women are taught two opposing ideals growing up: 1) that girls are supposed to cooperate and collaborate and that 2) other powerful and cool women can be a threat to your own success. But most girls and women know that female friendships are some of the most optimistic and best sources of encouragement in a world that seems so against us at times. They show each other how strong they really are and encourage each other to be their best true selves.

Another reason I love this show so much is that it brings into light so many difficulties tumblr_om7ikmdibe1qf5tr5o1_540disabled people like myself face on a daily basis. The show does not ever specifically talk about rights for disabled people, but points out many difficulties that aging and disabled people face in a very personal way. Throughout the show, Grace and Frankie both face challenges with aging and their health. 

Most of all, I love how much the show is so uplifting and optimistic. Through all of their struggles, Grace and Frankie are supported and grounded by each other.

Girls Just Wanna Have Fun(damental Human Rights to Healthcare)

Tonight I watched “The Medicare for All National Town Hall” live from Washington DC, hosted by Senator Bernie Sanders. This is the first town-hall style meeting discussing the possibility of expanding Medicare to all US residents. First, Senator Sanders addressed the abysmal state of healthcare in our country. If you’re thinking  “but our system is fine, I have great, affordable care” please explain to me why else the show Breaking Bad would make any logical sense in the 21st century in one of the wealthiest nations on earth. During the town hall, panelists discussed and took questions from the audience and from people online about how Medicare for All would work in practice and for the economy. Next, they had experts answer questions about how different countries around the world handle their single-payer healthcare systems.

I want to discuss what Medicare for All would mean for someone like me. A little background on myself: I used to be a relatively healthy individual, but almost three years ago my body started to deteriorate and I developed an autoimmune disorder. I used to be very active, leading many on-campus clubs and organizations at USC, on the honor roll, and working on a progressive master’s degree while finishing my bachelor’s. I still look like a healthy 22 year old woman, but I am currently battling multiple debilitating chronic illnesses. On an average week, I go to multiple doctor’s appointments and daily take 16 prescription medications to keep me functioning at a pretty poor level, but a better level than I was at a year ago. I’m physically incapable of working or even taking classes full time. Managing my health is more than a full time job.

When I turn 26 I still may not be able to work, and won’t be able to stay on my mom’s private insurance. Even with my chronic illnesses, I do not qualify for Medicare unless I get pregnant, (!!) which is beyond ridiculous. I just picked up a prescription the other day and it was over $100 for a month’s supply of the GENERIC. Not even the name brand. This is only one of my 16 medications. A few times per year, I end up having to stay in the hospital for emergencies. My most recent stay was for 1 night and cost about $26,000 before insurance, and $5,000 after insurance. I have some of the best health insurance in the country, and these costs still fall directly on the patient (me) and my family. Also, I’m sort of running out of treatment options. I’ve exhausted most drugs used to treat my conditions, and I don’t seem to be improving much. The next treatment option that looks the most promising would cost between $200,000 and $500,000 per year. To put it in perspective, the median home value in the US is $206,300. This is a ridiculous amount of money to ask of a 22 year old in exchange for the possibility of an improvement to a bare-minimum quality of life.

So what would Medicare for All mean for me? I have some very rare illnesses that even a lot of specialists have difficulty treating. So, it may be difficult for someone like me to initially find a doctor that would know how to treat me. However, once I found a qualified physician, this could mean that I could get the treatment I need. When I turn 26 or if my mom loses her job, I won’t have to worry about being completely uninsured and it would not put my family and me in debt for life to seek the treatment I need. My doctors would be able to decide what is the best treatment for me without having to factor in costs that I may not be able to pay. Additionally, the monetary costs that I have already had to face would be enough to bankrupt most families in the US. Moving to a Medicare for All system would be a huge step forward, cutting down on both individual and collective costs in our country. As of now, we are the only developed nation without universal healthcare but that is something we have the responsibility and duty to fix.  After all, how can we call ourselves “the home of the free” if costs for basic medical care can be crippling? 

If you want to help, please call your senators! Contact info for them can be found here.

#TimesUp on Coercion

 

This week there has been some serious controversy over the Aziz Ansari story and where it falls in the #MeToo and #TimesUp movements. In short, a woman, Grace, who went on a date with Aziz came forward and released an article titled “I went on a date with Aziz Ansari. It turned into the worst night of my life” in which she discusses the nuances of their night together. They had been flirting and talking at the Emmy Awards after party, then texting, then went out on a date. They went back to his apartment after dinner, and she had been having an uneasy feeling about the date already, but could not put her finger on what it was yetaziz-ansari-golden-globes.jpg. He was extremely pushy about wanting her

Before this, Aziz Ansari was well-regarded as a feminist ally. On his show Master of None, he tackled ideas about workplace and street harassment. He wore a #TimesUp pin to the Gloden Globes. On all sides, responses to this incident with Aziz ranged from some people suggesting that considering what he did to be sexual assault would cheapen the concept for others who had been“actually” assaulted or raped. Some people blamed the woman for not leaving his house, when it seemed as though he would not have stopped her from leaving. While what he did may not have been actually illegal, it was unethical and should be socially unacceptable.

This sort of thing is all too common where women feel uncomfortable or coerced into sexual activities. I think instead of classifying what he did as sexual assault, we need to be having a much larger conversation about consent. Consent should be enthusiastic and affirmative, and assumptions should never be made. If there is even a hesitation, we must erre on the side of caution. Just because someone consents to one thing does not mean they consent to another. Just because they have consented for an activity in the past with you does not mean they will again.

I don’t think that people are actually suggesting what Aziz did was rape, but women experience this sort of thing all the time without being able to put their finger on what exactly was wrong in the situation. There are a lot of men thinking that this situation sounds too familiar, even though they would never consider themselves “bad guys” or someone who would ever assault a woman. However, the reason that coercion is often not seen as the same level of wrong as more obvious forms of sexual assault is that the media until recently has shown this behavior as not only acceptable, but often times “just what men do.” These grey areas are where something may have made someone uncomfortable, but unable to say where exactly the night went wrong.

One of the larger ideas in #TimesUp movement are that the unequal distribution of power between men and women in our society needs to be confronted. Men may be unaware of the unequal power dynamic in their relationships– be it in the workplace or in the bedroom.