SPRINGSTEEN SPEAKS OUT AGAINST STIGMA

I recently read rock star Bruce Springsteen’s 2016 autobiography Born to Run. I have to admit: I started the book a virtual stranger. Of course I was familiar with Springsteen’s music, but mostly as background. I wasn’t a faithful fan. My only obscure connection is that I attended junior high and high school in South Orange and Maplewood, NJ with his drummer Max Weinberg.

Max and I weren't close friends but, I would say, friendly acquaintances. I remember him telling me one day in the early 1960s that he was going to be playing drums on a UHF television show hosted by John Zacherle. On the night of the broadcast, I set up the UHF antenna on my parent's black-and-white TV and was proud to see someone I personally knew performing on the tube. It was almost as exciting as the build up to the Beatles on Ed Sullivan.

Although I had no intention of reading Springsteen’s book, I decided to pick it up on the recommendation of a friend who knew I worked in the field of children’s mental health. At the same time I read the book, I turned my dial to E Street radio to add a sound track to my reading experience. By listening to the music I thought I could better get to know the author, who wrote extensively about his personal life in his songs.

Born to Run blends many elements of Springsteen’s life, from early family experiences to first steps as a musician to forming a band to becoming a rock star, husband and parent—and much more. But the core of the book is the enduring and troubling impact of his relationship with his father Doug. Near the end of Born to Run, Springsteen reveals a dream in which he is performing on stage. His then deceased father is sitting in the audience. Bruce approaches him in the dream and says: "Look dad...that guy on stage...that's you, that's how I see you." You’ll have to read the book to have a more complete understanding what the dream represents.

As I worked my way through the book and his music, I was struck with the overwhelming feeling that it was written in its entirety in the voice of vulnerable young boy, as opposed to world-renowned rock icon. The boy has been fighting the isolation and loneliness of living with mental illness in the family his whole life and, at the same time, he has been seeking enduring and healthy relationships. And, he found them.

As much as it is a book about rising to music stardom, Born to Run is a story about debilitating depression, mental illness and adverse childhood experiences. But it’s also a story of hope. Springsteen shows that despite his most troubling childhood experiences, resilience and healing are possible. Readers owe him a debt of gratitude, not only for the decades of socially conscious and uplifting music, but for stepping beyond stigma to, in his own words, “show the reader his mind.”

I started the book a stranger; now I'm a fan.

https://longislandweekly.com/springsteen-speaks-stigma/

Andrew Malekoff is the Executive Director of North Shore Child & Family Guidance Center, which provides comprehensive mental health services for children from birth through 24 and their families. To find out more, visit www.northshorechildguidance.org.

A COMMON STRUGGLE

Patrick J. Kennedy is a former member of the U.S. House of Representatives who has struggled with mental illness and addiction for most of his life. He has become a leading force in the passage of the Mental Health Parity and Addiction Equity Act of 2008, a U.S. law that states that it is illegal to treat diseases of the brain differently than those of any other part of the body. The battle ahead is for the law to be enforced in the face of health insurers who stand to profit by denying the full range of coverage for people suffering with mental illness and addictions.

In his 2015 book, A Common Struggle: A Personal Journey Through the Past and Future of Mental Illness and Addiction, Kennedy offers personal reflections on the impact of trauma, addiction and mental illness on the extended Kennedy clan. He talks about the rocky relationship he had with his dad, the late U.S. Senator Edward “Ted” Kennedy and about his mom Joan’s battle with alcoholism.  

At the heart of the memoir are Kennedy’s own revelations about his co-occurring mental illness and prescription drug and alcohol addiction, his path to recovery, and his ascendance to becoming, arguably, the nation’s leading advocate for parity and equity in mental health and addiction care. Kennedy has fought hard to lift the veil of ignorance about mental illness and addiction and to expose the health insurance industry’s tradition of denying and restricting access to care for individuals with brain illness.

Kennedy radiates a fire for eradicating stigma and ending discrimination against people with brain illness. According to One Mind, a nonprofit organization he co-founded, that is dedicated to benefiting all affected by brain illness and injury, “One of the harmful effects of stigma is that it can lead to discrimination. It could be as obvious as someone making a negative remark about your mental illness or as subtle as someone avoiding you because they think you could be unstable, violent or dangerous.”

On their website, One Mind lists some of the ways that these attitudes can be damaging and even dangerous. For example:

·      Reluctance to seek help or treatment due to the labeling

·      Lack of understanding by family, friends, co-workers or others you know

·      Fewer opportunities for work, school or social activities or trouble finding housing

·      Bullying, physical violence or harassment

·      Health insurance that doesn't adequately cover your mental illness treatment

·      The belief that you'll never be able to succeed at certain challenges or that you can't improve your situation

Kennedy rightly frames the inequities that people with mental illness and addictions face as a matter of civil rights.

What he has accomplished, which he freely acknowledges is the result of a collective effort, has already gone a long way to wiping out stigma and increasing people’s access to mental health and addictions care. His goal, he states, is to launch “a new civil rights movement, to finally force medical equality for diseases of the brain.”

Tens of millions of Americans owe Patrick Kennedy a debt of gratitude for leading the way. Now all of us must carry the ball forward by treating children and adults with brain illnesses with dignity; and demanding that government enforce parity and equity for all and put an end to discrimination.

https://longislandweekly.com/a-common-struggle/ 

Andrew Malekoff is the Executive Director of North Shore Child & Family Guidance Center, which provides comprehensive mental health services for children from birth through 24 and their families. To find out more, visit www.northshorechildguidance.org.

DAVID AND GOLIATH

On January 21, 2016 I received a most unusual award – a David Award – that was described to me as follows:

For each of the past 15 years, every January Networking® magazine has honored eight exceptional men – “Renaissance Men” who have performed generous and unselfish acts for the benefit of us all. The David Awards are named for David, the giant slayer, who represents the Renaissance Ideal Man memorialized by Michelangelo’s famous 16th century statue of David. Each of our honorees has been a true Renaissance man having excelled in business or academics and also accomplished outstanding heroic and humanitarian acts.

I thought that I would make this column a little more personal than usual and share my remarks here.

Having been selected for this honor led me to consider, "If I am David, then who is Goliath in my life?" I can think of many but I’ll share just two with you.

On the same day in late September that Networking Magazine publisher Christine Sheehan delivered the good news to me about this honor, my doctor called with the results of a biopsy and PET scan. She said that my cancer, which had been in remission for five years, transformed into something more aggressive. It was rapidly spreading and required immediate treatment.

In fact, if the David Awards breakfast was held just one week earlier to the day, instead of my sitting on the dais you would have found me seated in a recliner at Sloan Kettering, hooked up to an IV, and receiving what I am hoping will be my last infusion.

I tell you about my personal Goliath not for your sympathy. I tell you because I know I am not alone in this room of more than 500 people. I salute my fellow cancer survivors and family members of those who have battled cancer.

Although my first Goliath is more personal, and now public, my second Goliath is more insidious. It cannot be slayed by science and medicine, and it demands the attention of our hearts, minds and souls.

My second Goliath is stigma – the stigma that brings shame to people with mental illnesses and addictions; the stigma that denies them the sympathy and support that I have received in abundance while battling cancer.

Please understand that no parent would hesitate for even a moment to get help for a child with cancer. However, parents who have a child suffering from a mental illness or addiction wait weeks, months and even years to ask for help. Stigma causes many to hide and retreat, rather than stand and advance.

Stigma has two co-conspirators. They are the government and the health insurance industry. Government neglect and corporate greed represent nothing less than institutional child abuse and neglect that prevent sufferers from choosing and accessing life-saving treatment options. This is a clear denial of civil rights.

Defeating the Goliath stigma is a good start. It requires that we make a collective commitment to treating illnesses above the neck the same as illnesses below the neck.

If my being a David Award winner helps to inspire that, then I will truly feel a worthy recipient. Thank you.

https://longislandweekly.com/david-and-goliath/

Bio: Andrew Malekoff is the Executive Director of North Shore Child & Family Guidance Center, which provides comprehensive mental health services for children from birth through 24 and their families. To find out more, visit www.northshorechildguidance.org. 

BUILDING COMMUNITIES OF CARE

BUILDING COMMUNITIES OF CARE

By Andrew Malekoff©

What do the following have in common? Asthma, Cancer, Crohn's Disease, Cystic Fibrosis, Degenerative Disc Disease, End Stage Renal Disease, Hepatitis C, Hypoglycemia, Idiopathic Dilated Cardiomyopathy, Irritable Bowel Syndrome, Leg-Calvé-Perthes, Marfan Syndrome, Multiple Sclerosis, Migraines, Polycystic Kidney Disease, Scoliosis and Supraventricular Tachycardia.

If you guessed that they were all physical illnesses you are correct. However, another common thread is they are illnesses that a group of young people in the radical-alternative DIY (do-it-yourself) community have been diagnosed with and have written about (along with a few young people that care about them) in a publication entitled Sick, a compilation zine on physical illness.

For the uninitiated, a zine (derived from magazine) is a topical publication typically intended for an alternative or underground audience. A zine tends to include written and visual work aimed at promoting and supporting a social movement. DIY represents an ideal or value for many young people who associate themselves with the punk subculture.

One contributor, Luci, speaks for her fellow contributors when she asks, "How can a disabled person find allies and support?" This book will help supporters and supportees to find some answers, insight and inspiration.

Among the moving narratives in SICK is a love story entitled “Scar Mates” by Rainbow, who has been diagnosed with chronic kidney disease. After being rejected by one young suitor who could not deal with the scars left behind after Rainbow’s open heart surgery and kidney transplant, she fell in love with a young man that she met on-line, who has been diagnosed with Cystic Fibrosis and Diabetes.

Along with providing poignant first-hand accounts of living with physical illness and chronic disease, many of the authors offer practical advice for young people struggling with these ailments, as well as suggestions for friends and family members that care about them. For example, the authors advise patients to be kind and understanding about themselves and to ask for what they need.

There are also useful tips for friends and family members. In a piece entitled, “Illness and support,” Ben Holtzman says that people with illness do want to talk about it. He says that saying something small is almost always better than saying nothing at all. The practical advice contained in the collection might be dubbed as uncommon common sense because, although it seems very basic, it is the kind of advice that requires gentle prodding and encouragement to carry it out.

Beyond practical tips, there is great wisdom sprinkled throughout. For example, Emily Klamer, a student, writer and activist from Missouri, who is living with degenerative disc disease, writes elegantly about the “lurking threat” of illness that we all face sooner or later.

SICK editor and essayist Ben Holtzman, who was diagnosed with cancer at age 26, introduces the collection by stating that, "Illness is considered taboo; it's seen by many as awkward, if not depressing, to bring up...The collective strength of these pieces...is meant to further... action toward building communities of care."

The stories are gritty, no-holds-barred, first-hand accounts of what it is like to live and cope with physical illness and chronic disease, including the struggle to get and then find one’s way through the maze that is health insurance. By openly revealing what it feels like to be young and sick, the authors - mostly young women - go a long way towards supporting Holtzman's vision.

Hospitals and physicians would do well to have this publication, and ones like it, available as resources for young people with physical illnesses and their friends and family members. Giving voice to what it is like to suffer in silence, is a way that these young DIY authors have extended the bonds of belonging to create true communities of care.

Write to illnesszine@gmail.com if you are interested in learning more about building communities of care.

Published in the Anton newspapers on Long Island, NY in December 2009.

HEADLINE HATCHET JOB

Headline Hatchet Job
By Andy Malekoff © 2007

Early in December, 2007 there were several news stories about a man with a long history of mental illness who took hostages in Senator Hillary Clinton’s campaign office in New Hampshire. A headline on the front pages of the New York Post read: LOONY SEIZES HOSTAGES IN HILLARY’S OFFICE. For two consecutive days the New York Daily News printed headlines that read: WACKO BOMBS AT HILL’S OFFICE and NUT’S LIFE FROM HELL.

By now you know that the headlines were referring to an individual with a known history of serious mental illness. Had there been no such history then the derisive terms “loony,” “wacko,” and “nut” would have been a way of highlighting the lunacy of a desperate criminal act versus employing insulting stereotypes to label an individual with a mental illness. Although these headlines are about one man’s criminal act, the effect of the language in the headlines is to discredit all individuals with mental illness.

So, you may be wondering, what is the big deal? Or, you may be thinking that you are reading another tired diatribe promoting political correctness. After all, the man did do something undeniably crazy. Nevertheless, although juicy headlines sell newspapers, there is collateral damage when stigmatizing language about individuals with mental illness is used. The headline writers cannot hide behind the crime. Language that appears in the headlines of popular newspapers does influence people’s perceptions, attitudes and behavior. In this case they promote an undesirable stereotype and reinforce discrimination. The headline writers who write such headlines are the equivalent of schoolyard bullies except, in this case, the schoolyard is the entire New York metropolitan area and beyond, and the headline writers are more sinister and have more sway than the typical schoolyard bully.

Stigma experts Bruce Link and Jo C. Phelan from the Mailman School of Public Health at Columbia University, offer insights on how stigma evolves. First, human differences are labeled and assigned undesirable characteristics that lead to negative stereotypes. Labeled persons are then put in distinct categories in order to separate “us” from “them.” Finally, labeled persons lose status, and experience discrimination that leads to unequal outcomes.

Many individuals suffering with mental illnesses - children, teenagers and adults alike - have long histories of being at the butt end of cruel and stigmatizing taunts and jokes. Most people with physical illnesses, on the other hand, are beneficiaries of widespread understanding, sympathy and support. This is the reality despite the fact that neuro-imaging studies show physical changes in the brain are associated to mental disorders. Headlines that use terms like “loony” and “wacko” reinforce the notion that mental Illness is a sure sign of dangerous and irrational behavior, versus a disease with a biological basis. Headlines that employ such language also reinforce the idea that mental illness is something that is “all in one’s head” and can be controlled only if one has the moral fiber to do so.

It is shameful that the editors of major metropolitan newspapers choose to exploit isolated criminal acts to promote negative stereotypes and reinforce stigma in people with mental illness. Clearly, simply telling the truth and informing readers about a desperate criminal act is less important to them than taking the opportunity to exploit and discredit people suffering with mental illness, through malicious name calling that reinforces fear, mistrust and stigma.

This article was originally published in the Anton Community Newspapers, Long Island, NY.