Stigma UnStuck with Tufts University

read full article: https://as.tufts.edu/news/2019/01/stigma-no-more

Lynda Cutrell hangs her sculpture of the full human DNA sequence in the Tufts CLIC building

Cutrell's exhibit is part of Stigma Unstuck: A Mental Health Arts Series at Tufts. This multi-event art and film series is aimed at enhancing awareness and understanding of mental health issues to facilitate shifts in attitudes that perpetuate stigma and discrimination. Stigma Unstuck is being coordinated by the Department of Community Health at Tufts and the Community Health Improvement Department at the Cambridge Health Alliance.

An opening reception for the exhibit and the Stigma Unstuck initiative will take place at CLIC from 5 to 7:30 p.m. on Thursday, Jan. 24, 2019.

Engaging Students Through the Arts

Tufts has identified mental health and stress as important public health problems, as evidenced by the 2016 launch of the Mental Health Task Force. As Jennifer Allen, professor and chair of the Department of Community Health, points out, rates of depression, anxiety, and suicidal thoughts are soaring among college students nationwide. She believes art can be part of the solution. "It's been a dream of mine to bring students into difficult conversations through the arts," Allen said. "

"It's a new approach," Cutrell said. "We have champions in every walk of life — amputees who have thrived despite their challenges, people with ALS who are champions of inspiration, people with cancer who are surviving and fighting. Although hidden, there are plenty of champions in the area of mental health, too, but the concept hasn't quite been revealed due to stigma. This exhibit opens that view of mental health champions."

Cutrell teamed with Bruce Cohen, M.D., Ph.D., a neuroscientist and former president of McLean Hospital, and Rae Simpson, Ph.D., a science journalist, to create The Many Faces of Our Mental Health. Her goal is to both educate visitors about mental illness from a scientific perspective and provide inspiration by highlighting people who have had success in dealing with the challenges of mental illness.

The Diversity Is Intentional

Cutrell's exhibit includes portraits of 99 individuals, with equal representation from three groups: people living with symptoms of schizophrenia, people living with symptoms of bipolar disorder, and the people who love them. The subjects are mixed together without any labels as to who has what symptoms, which makes the overall piece more relatable.

The racial breakdown of the 99 people mirrors that of the 2010 U.S. Census. There is also diversity in terms of walks of life — among those photographed are people who have been homeless, a billionaire, a Massachusetts Supreme Court justice, six Ph.D.'s, several MBAs, and 22 veterans. All of this is intentional, as Cutrell wants every viewer to be able to identify with the faces they see.

A sculpture depicting the DNA strand in someone with mental illness symptoms is one of the most striking pieces in the exhibit. Cutrell incorporated four miles of fiber (representing the genes) to make it to scale, along with pearls and sequins (the proteins, histones, and amino acids) placed strategically on the twisted fibers. Twenty-five people, all of whom had had symptoms of schizophrenia or bipolar illness, helped assemble the work over a six-month period.

"I decided I'd break it open a bit, delve into the science, and use art as opposed to lectures or things like that to invoke some discussion," Cutrell said. "People can look at this piece and say, 'Mental illness can impact different people in different ways.' That's something I learned at SMFA — if you leave it open, people will figure out their own relationship to the piece. For someone in science, it might be all about the genetics. Someone who's into art may be wondering, 'What's that sculpture made of?' or 'How did you do that?'"

A trio of paintings featured in the exhibit has an interesting back story. In order to better understand her family member's illness, Cutrell met with neuroscientists at McLean Hospital who were studying it. They shared with her a dense research paper that took her three months to fully digest.

Cutrell translated what she learned into three paintings contrasting skin cells in people with schizophrenia, with bipolar illness, and those without any symptoms. "Art makes the paper accessible," she said. "I'm showing that mental illness isn't just behavioral thing, but rather is a systemic condition. It's not something that's caused by a family member; it's truly a biological symptom.

'Likable, Functional, and Valued'

Outside of her artwork, Cutrell has been a long-time advocate for people struggling with mental illness. She served on the National Alliance on Mental Illness (NAMI) Massachusetts board of directors for five years, including several as board president, and on the national NAMI board of directors.

In addition, Cutrell has been active in Massachusetts and nationally in pushing for training to teach police officers how to handle a crisis involving someone experiencing symptoms of mental illness. "If police officers and other first responders can appreciate how common this is and how to best deal with people in a mental health crisis, we'll have more success and fewer violent incidents," she said.

In 2018 The Many Faces of Our Mental Health had runs at Boston's Museum of Science as well as Salem State University and Gordon College. The next stop after Tufts is the Dartmouth-Hitchcock Medical Center, part of a health care system that trains nearly 400 medical residents and fellows a year and performs world-class psychiatric research. Cutrell believes she can make the biggest impact by educating young people on how to get treatment for mental illness and how to support their friends who are struggling.

"The biggest obstacle to treatment is self-stigma," she said. "People are less likely to reach out to get treatment because they're afraid; they think it's equivalent to some kind of worthlessness. This exhibit shows people who are likable, functional, and valued regardless of symptoms."

GUEST POST: Faces in the Crowd—99 of Them

This blog post originally appeared in February 2016 at: http://www.mcleanhospital.org/faces-crowd-99-them 

In viewing the 99 Faces Project—a diverse collection of portraits featuring people impacted by mental illness—it’s indistinguishable as to who are on the schizophrenia spectrum, who are on the bipolar spectrum, and who are the ones who love them. The diversity in age, gender, and ethnicity of the 33 participants in each category helps raise awareness that mental illness can affect anyone at any time.

The project was created by artist Lynda Cutrell, whose family member was diagnosed with mental illness. Through her experiences as an advocate and in meeting many people who live with schizophrenia and bipolar symptoms, she wants to help reduce stigma and show the public that mental illness can impact people from all different backgrounds. Meanwhile, her project helps reinforce hope and possibility for individuals and families affected by these illnesses.

Two of Lynda Cutrell’s 99 Faces

Hope and possibility, however, were unimaginable upon first hearing her family member’s diagnosis. Despite worrisome and progressive behavioral changes, she and her family never imagined what they would hear from clinicians.

“My experience, like so many families, was that there was nothing to prepare me for what happens emotionally or financially with a diagnosis like this,” said Cutrell. “It’s a pretty devastating thing—for both the individual who has the onset of this illness, as well as the family.”

Cutrell found there were few community resources available for families who were facing mental illness of a loved one for the first time. It was through McLean Hospital that she learned the latest research about schizophrenia and bipolar disorder.

“I went to a lecture about what was happening with mental illness research in the laboratory. The imagery of those cells in the lab was remarkable,” she said. “I was brought to tears, as it helped me understand this illness was systemic and that it wasn't something we caused. It was visual recognition of a real impact on life, and at the same time, a relief to see it.”

That lecture, hosted by NAMI Cambridge-Middlesex, was given by Bruce M. Cohen, MD, PhD, director of McLean’s Program for Neuropsychiatric Research, the founding director of the McLean Brain Imaging Center, and president and psychiatrist in chief emeritus of McLean Hospital from 1997 to 2005.

Cohen suggested that Cutrell become involved in NAMI. She welcomed the opportunity and served as president of NAMI Massachusetts for two years and also served on the organization’s national board of directors in Washington, DC.

Through advocacy work, Cutrell met hundreds of individuals and families and embarked upon her own mission to learn about their experiences with mental illness. She wanted to know more not only about their problems, but also about those who were in recovery and doing well.

“I asked people about their experiences in their own recovery and what I found out is that it’s not the end of life as we know it—it’s the beginning of a different kind of life,” she said. “I met a young woman who got her master's degree from Harvard after her diagnosis. I began to meet many individuals who went on to get their master’s degree, and some who went on to get their PhDs and had become doctors.”

“I thought, ‘how come I never heard this was possible?’ What I was facing initially was that there was complete limitation of productivity, love, life in general. No one told me anything different, nothing hopeful. I began to try and figure out what was most important to recovery and what I learned is that it was love and family,” she said, “but sometimes families give up because the prognosis sounds so final. Many were telling me the diagnosis would mean some form of institutional living.”

“One of the greatest comforts to me,” said Cutrell, “was to find out that it’s family that will ultimately be one of the most important components of recovery. There’s medication and treatment, but family and close friends are what primarily support the individual—it’s their foundation and what sustains them.”

“I wanted to communicate to other families what I learned and I wanted to do it quickly,” said Cutrell, who had spent 25 years in investments and was an adjunct professor at Boston College teaching marketing in the MBA program. She had left her job around the same time her family member's illness was developing, went to art school, and learned a different way of communicating: visual art.

“What I realized,” she said, “is that imagery communicates instantly. And it can show people recovery and to not think of this diagnosis as the end.”

All the Solutions are in the Black Box by Lynda Cutrell

As a visual artist, Cutrell’s website features an intersection of her art and the science that depicts various images of the commonness of mental illness as well as the cellular, brain imaging, and genetic research.

Cutrell and many other advocates believe that the media shapes the public’s perception of what it’s like for people with a mental illness and to be afraid of them and their behaviors. “The public is only exposed to a media construct and they paint that picture so poorly,” she said. “It also affects the people who have the illnesses, so I wanted to show the situation in a different vein—not only for the newly-diagnosed families but also try to shape—if I could—what the public should realize is possible.”

“I shuffled up all the portraits in the 99 Faces Project so you can’t tell who has what—but what you can tell is that they’re laughing and that they’re having loving relationships,” said Cutrell. “There are three million people in the United States who suffer from schizophrenia and not everyone ends up like the couple of dozen we read about in the newspaper. Recovery depends on families, community, and the resources and encouragement they receive.”

In fact, Cutrell pointed out that the portrait of Mark Vonnegut, MD, son of the late American novelist Kurt Vonnegut, is featured in the project. He has a successful pediatric practice and is the author of two books. He will be the keynote speaker at McLean’s Board of Visitors meeting on May 4.

“My goal of 99 Faces,” she said, “is that when a young adult finds out they have a diagnosis and it’s not going to go away—that they need to know they can still have a productive life filled with loving relationships, and their families need to know the importance of being and staying involved. I believe we can begin to change the public's perception.”

Cutrell will begin to realize that goal when the 99 Faces Project is displayed at the Boston Museum of Science this fall. The idea was proposed by Cohen after he gave a talk at the museum last spring.

“Ultimately the value of 99 Faces is engagement and information,” said Cohen, “and this is true of much of Lynda's art as well—the idea is first to engage people—once you engage them with the photographs and the art, you educate them about the realities of mental illness. What the art stresses is the humanity, the humanness of people with psychiatric disorders.

“The museum sees the educational value of this exhibit,” said Cohen. “What we are all really after is breaking down stigma, getting people to be more empathic. In the exhibit we’ll be using various media—videos, music, text, and a timeline—so that when people visit the exhibit they will learn a lot more about mental illnesses as medical disorders, including what we know about them, what can be done for patients and families, and what the promise of the future is in research and treatment.”

Cohen and Cutrell are also working on a book based on the lives of several of the individuals in the 99 Faces Project. Cutrell is writing about the journey of each person; Cohen is describing the science of what is happening to the individual.

Ambition Starts at the Top

The 99 FACES PROJECT has an astute artisan who never minces words, but puts them into simple prose that always is full of conviction and contention. You only have to hear it once to appreciate where this noble endeavor may eventually reach and be successful:

" Our project is to invite everyone in, surprising viewers with the wonderful folks that they may have missed, and can appreciate. Also to have the young members of our culture begin with this new view. "

What can we learn from 99 FACES?  A lot about examples of equal humanity and maybe a chance to win a long fought war against diseases of any kinds, even when you can't tell whom has what by looking at still images. That makes the playing field level? Is there a stepping stone for everyone, not just the few? 

The endeavor is called 99 FACES, not 1 or 999. Though a mere random number, it is assumed that no one will be left behind in any way, shape, or form. We're all in this together. The project refuses to contribute to a prejudice that already permeates much of the world. The-all-for-one-and-one-for-all attitude is another part of the 99 FACES belief system. You will have a hard time disagreeing with the potential positive nature of this premise, even while it asks you to make seemingly mind probing and varied decisions regarding what you are looking at.

Because this subject matter is relatively new and has not been presented in this form or at such great lengths in such lucrative venues, 99 FACES honors those whom it represents by not creating any friction between its citizens by mentioning any personal health related concerns, nor does it care to suggest the specific conditions that may or may not exist. That would alter the playing field and throw stigma right back in the direction of the 99 FACES. 

To sum up: 99 FACES is a learning experience, each visage is treated the same.  This will bring about a fair, scientific and purposeful debate regarding the general public when talking about the effects of mental health, that everyone has a chance to be looked at as the same.  99 FACES has come a long way from science fiction to a more believable and loving science fact.

99 Faces Is Infinitesimal

And so hard to tell one from the other. That's the point. We all are one. Nothing separates us but the clothes on each other's back. Our blood flow is all the same. 99 FACES deals with the human condition by stripping the innuendo and cutting right to the chase. Put some fancy duds on somebody and guess if that model is being mentally victimized in some way. You have as many chances of being 99 times right as you would be 99 times wrong! It's a lesson in psychological photography and the art of reason.

You might as well be looking at a number with an unforeseen amount of zeros on one end and an equally long duration on the other. With people who have any strain of a mental health issue, ask yourself this question: How many people are there in the world? Just by a mere glance it is virtually impossible to fathom what the percentage of our kind makes up those census type figures. Or who or is what? Your guess is as good as mine. Just at a glance, what is the chance????

This project tries to come to that invisibly visible conclusion. Can you see in only 99 of a possible impossible scale the amount of folks who are stricken with the ailment? Yes and no. Facial ticks and sporadic movements in a specific count of pictured likenesses does not necessarily mean that those few have nature's diagnosis. Whose to judge and where are we going with all this?

99 FACES points out using a very accurate yardstick that a sizable tally of the human race are unique in their own way, some of it is obvious, many traits are not, and we fall asleep at the wheel when we try to say that somebody has a mental illness when in reality they do not. Many times, the eyes lie. Thoughts play tricks on you. You cannot come up with snap judgments of somebody just by looking at a photograph or be next to a guy and expect to give an accurate synopsis without actually to coming up with the proper detailing just by looking at a person. That is a dead giveaway that by using all backgrounds, looks and demeanor's not to mention fashion sense all the above meant to cover up the model's more obvious serious characteristics that might have given him other away, that it is humanly impossible to tell if he or she is mentally ill and it is done using a skillful artistic bent, photography and fashion.

99 FACES does not claim to be a guessing game. It simply wants to point out in a visible way using the arts that no one advocate, peer or observer looks like the stereotype or actually is what some people say about what the typical livelihood of one of us or should even be judged as such, to avoid stigma, another parallel of the 99 FACES cuisine. It tries to prove that no matter who you are, no matter what you have or have not, are or are not, it is not right to call these subjects anything than what they are: beautiful and perfect in their imperfections where nobody can guess exactly how many more sculptured souls there are before, during and after them, regardless of the planet's population..

This is not a numbers game. It comes down to setting values. People should not be labeled as having a liability because they are more or less able to do more things than they are not nor should we have to put a number on them just to prove that when you dress them up and put them next to a completely different person and make that enjoining curve go for a long distance that we are any different, prettier, look better or on the other hand deserve scorn than anyone else because we are ALL judges and juries who when we keep our mouths shut, and just be human, there is no difference from 99 FACES to 1,000,000!

Whether mentally positioned people are placed in a photo shoot or just walking down the street, the only call that should be made when comparing any homo sapien should not include the size and capacity of one another's brain or willpower but what that person can accomplish by virtue of a good heart regardless of the cards that they were dealt.

99 FACES is 100% correct in its exploration of humanity.  When a certain flaw or condition presents itself, it becomes more socially acceptable under the proper circumstances, thus cutting down stigma, an enviable and proper goal in dealing with the fight against beating the weight of the disease. Dress somebody up and the neighborhood looks brighter because you become accepted as your problems are rejected. A good looking person never has to explain their pain. A lot of times the chosen few who have debilitating injuries like ours don't have that luxury and that's the point. Feel like a million bucks and full of better luck to you and yours if you buy it a nice new set of clothes. More often than not, we'll cease to disagree.

99 FACES doesn't miss a beat in explaining that both inside and out, we are all the same! But you'll never be able to tell, 99 per cent of the time!