Philadelphia: Birthplace of the American Revolutions

My poorly shot panorama of the day’s speakers and organizers

On Sunday, January 15, 2017, the birthday of Dr. Martin Luther King Jr. and one day before the national day of recognition that honors him, writers and readers across the United States gathered in the spirit of Writers Resist, a movement born out of the need to protect democracy and the spirit of justice following the 2016 election.

I’m from Philadelphia, born and raised (cue obligatory recitation of The Fresh Prince of Bel-Air). It stands to reason that I’m biased in favor of my hometown’s importance, but truly no city encapsulates America like Philly. We are the nation’s first capital, the birthplace of both the Declaration of Independence and the Constitution, the finish line of the Underground Railroad, a key battleground in the war for LGBTQ+ rights, a haven for writers and artists of all stripes. The America I love and seek to protect would not exist without Philadelphia.

The Writers Resist event in Philadelphia was hosted by the National Museum of American Jewish Heritage and organized by Alicia Askenase, Nathaniel Popkin, and Stephanie Feldman, and featured readings from some of Philadelphia’s most prolific writers, reading poetry, petitions, and speeches from some of history’s bravest and most iconic speakers, some who were famous, some who simply deserve to be.

Six of the 36 readings were first given in Philadelphia, including the Resolution for Declaration of Women’s Rights, given during the centennial by the National Woman Suffrage Association, read by Lise Funderburg, and FDR’s 1936 acceptance speech for renomination, read by Lori Tharpe.

Most stirring, for me, was Lauren Grodstein’s rendition of Jameson Fitzpatrick’s 2016 poem “I Woke Up”. There are two kinds of people in the world, those who recognize that our identities, our passions, our very existences are political, and those who have yet to realize it.

In being political, one of the most important things to realize is that not all of our political perceptions are the same, and the beautiful diversity showcased on Sunday illustrated such. Men spoke women’s words, white, Black, Latinx, and Asian voices co-mingled with each other’s wisdom, disabled people offered each other solidarity, queer people and their allies spoke their truths to a crowd 300 strong.

Words, of course, will not be enough going forward. There must be action and resistance if justice is to be both won and preserved. But words are the genesis of movement. Stories are our empathy, articles are our information, media is our ability to connect. Revolutions do not happen without writers, and writers do not have a voice without readers.

Learn more about the movement at WritersResist.com and see a full list of the readings at #WritersResistPHL*

*Before Joey Sweeney opened with the Bob Dylan song “Hard Rain’s A-Gonna Fall”, he noted that the song selection was chosen BEFORE #UrineGate broke.

Memoirs and Mental Health

Up until this past year, memoirs have never really been high on my to-read list. It’s one of the reasons I’m grateful to have stumbled upon that seemingly long-ago post on XOJane that inspired this endeavor. I’ve read the stories of fascinating women leading amazing lives. There’s a body positive mom who was tapped for a TED talk, a barrier breaking TV host and journalist, a descendant of a Nazi officer trying to make sense of her family’s past, an iconoclastic, world-traveling artist, and the Queen of the Geeks, to name just a few (full list here). And no matter what kind of lives these women are living, they all share common characteristics: they foster community, they inspire their readers, and they all have experience living with mental illness.

Artists across all media and genres seem to share a collective experience with mental illness: depression, anxiety, obsessive-compulsive disorder. Art has been therapeutic for people living with mental illness since long before we had words to define them, which explains the tendency to create as a method of coping. But as much as art is therapy for the artist, it’s a catharsis for the audience. Art is the light in the darkness, the words, pictures, and sounds of what lives inside our own minds, letting us know we are not alone at the moments we most need to feel a connection.

Mental illness, which is so unfairly stigmatized, is not like diabetes or cancer or high blood pressure, the physical ailments to which it is so often compared. The organ affected by mental illness is the one programmed to detect problems, but if someone lives long enough with depression, anxiety, etc. they become almost impossible to dissociate with reality. It makes de-stigmatization all the more important, so that those who suffer will know that living in pain and fear isn’t permanent, and that they can move beyond it. It is only by allowing us to speak our truths that we can relieve the burdens of others.

Healing is not linear. If you have mental illness, even if you are being treated and feel in control, you will have another valley. Do whatever you have to do to ride out the darkness safely. It has passed before and it will again. If someone you love is living with it, you will say or do the wrong thing. They will be unresponsive and emotionless and maybe even mean, but don’t stay away because of it. Everything passes, even the worst of times. And the stories shared by the wonderful, wise women I’ve read this past year are proof that life, ridiculous, funny, tragic, beautiful, strange life, is possible and rich in all its complexity. There is never a need to opt for a permanent solution to a temporary problem, but there is great need to join the chorus of people living with mental illness and their loved ones, stripping away the stigma and sorrows until we no longer suffer losses because of it.

Unspeakable Things by Kathleen Spivack

Available for purchase here.

If you’re planning on using these waning days of summer for a few final hours of sun-soaked beach vacations before the weather turns and the days shorten, do NOT bring Unspeakable Things with you. For all the world is well acquainted with the horrors of the Holocaust, there are as many ugly realities that lay hidden in the shadows of history that Spivack’s novel pulls back the veil on. It’s not an easy or comfortable read.

It’s nigh impossible to not draw parallels between the European refugee crisis during the advent of World War II, and the modern Middle Eastern crisis faced by refugees fleeing the Islamic state. When blocked from safety through legal means, desperate people will fall to shady and even immoral means to find shelter for themselves, which leads to innocents being holed away with the same people they were fleeing from in the first place.

Unspeakable Things lives up to its name. Eugenics, rape, and pedophilia are shaped into a story with language so gorgeous it only serves to highlight the horror of what is so lovingly rendered. It’s not without its problems: one of the vilest characters is gender non-conforming in a cultural landscape rife with vilifying depictions of trans, non-binary, and other GNC people, a gay son serves as the sacrificial lamb for the rest of his family’s freedom, leaving a guilt-ridden father to tend to his grieving, catatonic wife.

In a simplistic purview, Unspeakable Things could be seen as a treatise against the acceptance of refugees, but in a more thoughtful, analytical lens, it’s a highlight of our historical failings and missteps, a spotlight on the people we’ve failed to help in the past and a blueprint for how we can be better.

Brain on Fire by Susannah Cahalan

Available for purchase here.

Susannah Cahalan is alive today because she couldn’t draw the numbers on a clock.

In her early twenties, Cahalan, a woman emblematic of youthful American success–well-educated, ambitious, working as a journalist, living in New York, recently embarked on a serious relationship–started having memory lapses, hallucinations, episodes of rage and violence that led to her institutionalization, with the going theory being psychosis or schizophrenia.

To call Brain on Fire a memoir could be a bit misleading–Cahalan’s account of her disease, diagnosis, and recovery is largely informed by her family and friends, as well as Cahalan’s accounts of taped interviews she watched without recalling. She has enormous chunks of memory missing from her time in the hospital, waiting to discover the cause and cure for the erratic symptoms that sent her life into a downward spiral.

The importance of advocacy when it comes to mental health is beyond words. While many of Cahalan’s symptoms were textbook for a diagnosis of schizophrenia, many could not be so easily explained and were glossed over. Only because she so ardently did not fit the profile for schizophrenia, and because her family advocated so passionately on her behalf, did Cahalan live to become a major advocate for others with her condition, ultimately coined by Dr. Josep Dalmau, as anti-NMDA receptor encephalitis.

It was another doctor, Souhel Najjar, who first thought to give Cahalan the clock test, a diagnostic tool used primarily for patients with Alzheimer’s or other forms of dementia. When she lumped numbers 1-12 on one side of the clock face, it was the clue doctors needed to eventually deduce that half her brain was swollen, and she was perilously close to death.

Though expensive, Cahalan’s treatment was ultimately straightforward, and today she’s one of the leading awareness raisers of the autoimmune disorder that almost cost her life. It’s sobering to consider how many other Cahalans out there died because they were poor, or uninsured, or lacked support. Even in the early stages Cahalan was accused of “partying too much”.

With this book, though, and her testimony, those who find themselves lacking her resources now have one in her. The more we speak about health, especially the aspects that have been stigmatized by society, the few tragedies will come of a system that’s quick to both dismiss and fail its patients.

 

Me Before You by Jojo Moyes

Available for purchase here.

I wanted to read Me Before You because the hype behind the forthcoming film adaptation had me convinced that the story had to be better than the general ableist tropes that turn such stories into cliches. Having read the novel, I’m for once in my life hoping a movie diverts significantly from the source material.

Quick interjection: This and all reviews are going to be spoilery. You’ve been warned.

Me Before You centers around Will, a one time whiz kid financier/amateur daredevil (because of course he is) who finds himself a quadriplegic following an (ironically) ordinary car accident. The story has a brief interlude with the accident but is focused primarily on his new life in a wheelchair. He’s paired with Lou(isa), a working class and somewhat aimless young woman who’s hired by Will’s mother to be a caregiver/cheerleader for the now melancholy Will. Love ensues, because of course it does. In a twist, however, Will can’t reconcile himself to life in a wheelchair and plans to end his life via physician assisted suicide in Norway. In a greater twist, he actually does it.

Will’s disability is not addressed as a reality, but rather as a plot point to fuel the story. Which is fine, it’s what fiction is made of, but the way its used in Me Before You has potentially awful implications for both disabled people and caregivers because it rests on the laurels of hurtful and harmful stereotypes.

Number one is the novel’s cavalier attitude towards caregiving. Hollywood and pop culture have a collective idea that pink collar professions like caregiving and teaching require nothing but pluck, resolve, and a big heart. I’ve done both in my life, and while that list is necessary, no teacher or caregiver has ever, ever, ever been successful without a bounty of education and training. I’ve sunk myself into debt paying for the degree that enabled me to work with special needs individuals and spent countless hours in boring but essential mandatory training every year to make sure I’m at the top of my game, so the idea that a character like Lou, whose primary qualification is cheerfulness, could do my job is horribly insulting.

This is not an indictment of Lou, but rather Will’s mother and de facto primary caregiver. She’s an upper class woman with a wealth of resources and a job as a district magistrate–if anyone should know better than to blunder half-assed through the hiring process, it should be an educated and presumably intelligent person such as her. Will has a nurse who attends to his medical care, but Lou is hired to attend his basic needs, prepare his meals, and keep his spirits up. What Lou doesn’t know is that Will is fresh off a suicide attempt, and she has six months to change his outlook on life before he heads off to Norway, per a deal he made with his mother.

Should anyone reading this be confused, let me be clear: you do not, ever, for any reason under the sun, assign a caregiver to a suicidal patient WITHOUT TELLING SAID CAREGIVER THE PATIENT IS SUICIDAL. Lou is only ever told she can’t leave Will alone for longer than 10 minutes, but is never told why. Not, however, that she’d have many options if Will did self-harm, as she hasn’t had any psych, first aid, or CPR training.

Lou’s naivete and dearth of qualifications circumvent the potential fallout for developing a romantic relationship with her patient, a dead horse Hollywood has beaten into glue.

The greater problem with Me Before You is its treatment of the character of Will. Will faced a serious trauma, and while accommodations have been made for his body, little more than lip service has been rendered to his mind. There’s no significant in-story address given to the kind of psychotherapy someone who’s had such a drastic alteration of circumstance would need to adjust. 2007 Will is a London big shot who spends his free time bungee jumping, whitewater rafting, and generally being a master of the universe. 2009 Will spends his time in his parents’ country home, reading, watching tv, and spending absolutely zero time with anyone who isn’t being paid to be with him. The accident triggers his depression, his environment exacerbates it.

Through various innocuous happenstances, Lou discovers that Will is going to end his life, and decides that she’s all in for getting him to change his mind before the deadline is reached. Does she help the wealthy, well-connected former tycoon set up a consulting business to give his days purpose? Does she try to organize meetings with other quadriplegic folks to foster a sense of community? Does she research the latest technologies to see what can be done to give Will more independence? No, somewhat, and no again. She plans and executes a few ill-received outings, all without Will’s input.

The greatest problem with Me Before You is that both the characters and the narrative rob Will of his agency. The story purports that the tragedy is Will’s inability to reconcile his new circumstances with the self-described “big life” he was living before. In reality, the tragedy is Will is completely robbed of his agency by the abled people in his life, all of whom collectively think that love outweighs respect, and use their good intentions to pave a path straight to the destination of the proverb. Will’s suicide is essentially him reclaiming control over his autonomy, the most basic and important of human rights.

Will, like most disabled characters in mainstream fiction, serves as a prop for Lou’s abled character–her growth, her arc. There’s a richer story to tell when he gets to grow alongside her, or even, dare we dream, be the star of the show.