Book Ends: "Written Off" by Philip T. Yanos

Book Ends: "Written Off" by Philip T. Yanos
A Column by Kurt Sass
Examining Stigma with a Critical Eye

Dr. Yanos, a Ph. D. and Professor of Psychology at John Jay College, has written a captivating and well-researched book on the history, foundation, and most importantly, the effects of stigma about mental illness. This stigma includes the stigma by others (media, government, community and society in general), but also the stigma mental health consumers place on themselves (Self-Stigma)

Dr. Yanos has certainly put a tremendous amount of time and effort into this book as there are almost 500 references cited. Many of these references point to a current theme: The stigma and misconception (by both society and consumers alike) that once a person has had a psychiatric episode they will never go back to having a normal life.

Dr. Yanos points out many true instances of how this stigma has affected people's lives. The Nazis, for example, started an extermination campaign of their own people who had mental illnesses in 1939 called the T-4 program. The rationale behind this (even advertised in propaganda films) was that these were "mercy" killings and acts of euthanasia, as people with mental illness were incurable.

Another example is the actress Margot Kidder, who was extremely popular from the Superman and other movies. In fact, by the 1980s, she was one of the most popular actresses in the world.  In the 1990s, however, she suffered a psychotic break, which was widely publicized. Although she has not had any episodes in many, many years, she feels that people still think of her only in terms of the breakdown, and that this has hurt her career tremendously.

Of course, it is not only celebrities who have to deal with stigma. Dr. Yanos relayed the story about a single parent in Kansas, who, shortly after giving birth in 2009, experienced a psychotic episode. Her daughter was taken into custody by child welfare authorities. The mother was treated and recovered. She petitioned to regain custody but was denied even though she never abused or neglected her daughter, even while she was symptomatic. The judge in the ruling stated that her condition "is permanent and there is no likelihood the condition can be reversed." She went on to give birth to another child in 2011 and has been allowed to keep custody of that child, but not her first born. As of 2014 things have remained the same.

The last story I would like to share from the book is how stigma from the community can cause mental health consumers to suffer from "Self-Stigma." While doing an ethnographic study in Los Angeles, a sociologist came across the case of an intelligent, outgoing man in his 30s, living in a community residence. Due to all the stereotypes he heard over the years that no one ever recovers from mental illness—although he was no longer suffering from any symptoms of his mental illness—he was desperately struggling and grappling with these negative stereotypes and stated that he had a "futureless future." He feared that he was becoming a "human rock," and that he had no hope. He eventually committed suicide.

Alas, there is hope. Research from the book has shown at least three strategies that have proven to work. The first is Cognitive Behavioral Therapy. The second is a National Anti-Stigma Campaign. (Note: The United States has local campaigns, but not a national one.) The last one is peer support.
I have given just a few examples of the stories showing how stigma can impact people's lives and the names of the strategies most effective in fighting stigma. I highly recommend you read this book to both read more of the stories and to find out how the strategies mentioned above work.

The Ayesha Karim Story

The Ayesha Karim Story
By Ayesha Karim
The Little Black Girl That Grew Up and Became Herself.

What makes a healthy self-image? It’s not perfect parents, but good parents, loving parents and a protective environment. I lived in a rather protective environment with a middle class socio-economic background. My stepfather retired from his Social Security Administration job after 25 years, and told me he loved the poetry chapbook I had published in 2016.

I started writing poems in the 5th grade while attending a school called Al-Karim in Old Brooklyn. I call the Brooklyn of my childhood Old Brooklyn. I was born in Brooklyn, New York on January 28, 1981 at a hospital called Brookdale. My parents loved Chinese food and my mother said their favorite meal was called Chicken Cantonese. 

This is the story of the little African American girl who grew up to become a woman who likes and accepts herself. Ayesha wore a school uniform that consisted of a green sweater with AKS on it for Al-Karim School and a green plaid jumper that all the girls wore to school. Ayesha went from preschool to 6th grade at Al-Karim School, which had mostly African American students. Ayesha was a smart girl and her teachers encouraged her parents to skip her a grade in elementary school.

Ayesha started writing poetry in the 5th grade. She loved to write poems about everyday mundane occurrences. She kept a composition notebook for every subject when she was a little girl and pupil at Al-Karim School. She was also good at mathematics.

Ayeesha left Al-Karim School and went to the Brooklyn Friends School, an integrated K-12 independent school established by the Quakers, for 7th and 8th grades. She was a shy 10- and 11-year-old.

Ayesha got into three New York City Catholic high schools after she took the Catholic Schools Admission Test in 1993. She chose her top three schools: Catherine Mac Aulay, an all-girl high school in Manhattan where school uniforms were mandatory; Bishop Ford high school; and Bishop Loughlin, the school her cousin Jeanette went to. 

Ayesha was in the honors program at Bishop Loughlin and in the best freshman class until she started to lose her own voice and develop schizophrenia.

Ayesha’s parents, Shellon and Neil, moved with their daughter to New Jersey in the summer of 1994. One day, in February 1995, after only six months in New Jersey, Ayesha was walking home from the school bus when a man screamed “Nigger” at her and sped off in his car. This was the incident that pushed Ayesha over the edge into schizophrenia.

Ayesha finished high school on home instruction. She graduated from a 4-year college/university at age 34 despite living with schizophrenia since she was 14-years-old.

Ayesha volunteers with an organization called NAMI (National Alliance on Mental Illness). She has been involved with NAMI Mercer NJ since September 30, 2008. She’s been a volunteer from December 2010—present. NAMI gives Ayesha quality of life. Ayesha has a place to go, friends to socialize with and a place to volunteer and be productive.

Ayesha had a poem published in the January 2018 NAMI Mercer NJ newsletter. She has published several poems in their newsletter since January 2013. Ayesha is a poet, creative writer, blogger and now a children’s book author. Ayesha is in her mid-late 30s. She loves putting on lipstick, one of her five moto jackets and a motorcycle hat while smiling at herself in the mirror.

Ayesha feels good about herself, having grown up from that bullied little African American girl who wrote poetry as a form of escape since the 5th grade. She is a self-love advocate and quite independent despite her diagnosis of schizophrenia or schizoaffective disorder.

Ayesha loves her life and says, “I wouldn’t have done much differently even if I could. I made peace with my illness. I have SZ; SZ doesn’t have me.” That is the Ayesha Karim story!

Return Our Sanity Through Timely Treatment

Return Our Sanity Through Timely Treatment
By Jane
People with Stable Minds Can See Illness for What It Is

It's the day after the Newton Children’s Massacre and I want to say something as a mentally ill person. I have had bipolar disorder all my life. I have been successfully treated for the illness for 23 years. Since then I have done extensive research on the disorder and written four books on the subject. I have developed opinions on the way treatment is given (and withheld) in this country.

Mentally ill persons are the most discriminated persons in the country. They can easily be fired from jobs (“she just wasn’t capable of doing the job,” instead of the truth—we were afraid of having a mentally ill person around).

When people find out about their illness, they lose friends and sometimes are blackballed from organizations. A mentally ill person has to be careful with what he or she says and does at all times, so as not to trigger stigma.

At the same time, access to treatment has been made difficult. In the past few years, states have cut access to mental health treatment by limiting the illnesses they will treat. In my own state, mental health clinics will only treat those with schizophrenia, depression, and bipolar disorder. No other illnesses are eligible.

In the past year, I was cut from the program after five successful years with the same psychiatrist because I was “too stable” to receive treatment any longer. And I am a person who actively seeks treatment, demands it, and insists that I always have my medication, even if it means an ER visit to get it.

What about those who resist treatment? Those like the school, theater, congress-people, and mall shooters? The profile invariably shows that they did not seek treatment, that they refused it. Often it is found that a parent tried many times to get help for their child, but was turned away because he was not a danger to himself or others—yet.

Read Pete Earley’s book Crazy, in which he describes his efforts to get help for his bipolar son. He found that most mentally ill people are not in institutions, but in jails or prisons, because they did not get help when they needed it, but the criminal justice system intervened after they had acted out.

What about a person’s right to be healthy? We don’t leave sick people lying on the street to die. We deliver them to the hospital to be healed. What about a person’s right to not be mentally ill? They are in no shape to make a decision as to whether or not they should receive treatment or medication. They have a right to be treated. The “freedom” we allow people to have in our country to be mentally ill is illusory and has nothing to do with real freedom. These are chains that bind and hold a person even as they declare their own freedom.

Treat the person—return him or her to sanity—then let the person decide whether or not they wish to be ill. Then, and only then, are they capable of making such a decision. We need to upgrade our mental health system and to change our laws to deal with the reality that is mental illness and to truly help the helpless.

Mobilization for Justice Helps Nursing Home Residents Live More Independently

Mobilization for Justice Helps Nursing Home Residents Live More Independently
By Daniel A. Ross, Senior Staff Attorney, Mobilization for Justice, Inc. (Formerly MFY Legal Services)

Mobilization for Justice (MFJ) offers nursing home residents advice and representation on a wide range of legal matters. MFJ’s Nursing Home Residents Project continues the work of Friends and Relatives of the Institutionalized and Aged (FRIA), which provided information and advice to nursing home residents and their families for 35 years.

Callers to the Nursing Home Residents Project’s intake line receive advice about residents’ rights, decision-making, Medicaid and Medicare, and discharge planning. We also represent individuals in administrative hearings and litigation to preserve their apartments in the community, obtain home care, and protect residents’ rights.

For example, one of our clients, Ms. L, is a nursing home resident in Far Rockaway. She wanted to attend her granddaughter’s graduation ceremony in the Bronx. She contacted us when the nursing home refused to approve a day pass. MFJ filed a lawsuit that forced the nursing home to allow her to attend the graduation. Ms. L explained that a day pass “is important because it helps me relax, gives me something to look forward to, allows me to visit my family and reconnect with friends.” We published a report about this widespread problem called Imprisoned in Their Homes.

In another case, Medicaid denied rehabilitation services for Ms. H, a nursing home resident who wanted to return to her apartment. MFJ successfully challenged the denial so she could receive additional therapy. She’s looking forward to returning home.

MFJ also advocates for residents who need help getting discharged from a nursing home. While Ms. G was in a nursing home, her landlord had illegally evicted her from her apartment. MFJ forced the landlord to provide her with another apartment. We also helped her obtain the home care and other services she needed to succeed in the community.

MFJ tracks trends in the complaints we receive to support policy advocacy and impact litigation. With pro bono help from Patterson Belknap Webb & Tyler LLP, we represent plaintiffs in a class action case against the Department of Health. The lawsuit alleges that many nursing home residents have waited years for services from the Nursing Home Transition and Diversion Waiver Program. The plaintiffs are among thousands of New Yorkers who remain trapped in nursing homes, when they could be receiving the care they need in their own homes.

MFJ hosts the Alliance of New York Family Councils (ANYFC). ANYFC is a group of leaders of nursing home family councils who share information and advocacy strategies to ensure their loved ones receive quality care. We also present trainings for the Long-Term Care Ombudsman Program and provide technical assistance to lawyers and other advocates.

In 2012, MFJ revised FRIA’s guide for residents and families, Nursing Homes and Alternatives. Called “the bible of long-term care for the elderly and their caregivers,” this book has been used by many families to ensure that their relatives receive the care they deserve in nursing homes. MFJ also developed short fact sheets on common problems faced by nursing home residents and their families, including residents’ rights, visitor policies, involuntary discharge, and medical decision-making.

For assistance with a legal problem affecting a nursing home resident, call MFJ’s Nursing Home Residents Project on Tuesdays between 10:00 a.m. and 5:00 p.m. at 855-444-6477.

Criminal Justice Forum Reveals New Information and Old Problems

Criminal Justice Forum Reveals New Information and Old Problems

By Carla Rabinowitz, Advocacy Coordinator, Community Access, Project Coordinator, Communities for Crisis Intervention Teams in NYC (CCINYC)

Community Asks Its Leaders, “What Is Taking So Long?”

The Daily News, The Greenburger Center for Social and Criminal Justice, and Metro Industrial Areas Foundation(IAF) hosted a forum on diverting people with mental health concerns away from the criminal justice system.

The February 14, 2018 forum was actually the 4^th in a four-part series.

The focus of the last forum was Crisis Intervention Team training and catching people at the first intercept. An intercept is a step where people encounter the criminal justice system. There are 4 intercepts:

·         Intercept 1 is on the streets, where people meet police;

·         Intercept 2 is from arrest to disposition;

·         Intercept 3 is diverting people when they are in jail away from longer sentencing; and

·         Intercept 4 is release and re-entry.

In attendance were some heavy hitters in the field of mental health and criminal justice. There was Dr. Gary Belkin, Executive Deputy Commissioner of the New York City Department of Health and Mental Hygiene(DOHMH), Commissioner Elizabeth Glazer, Director of the Mayor’s Office of Criminal Justice, and NYPD Commissioner James O’Neill.

A large part of the planning for this event centered not only on what the police are doing but what the Mayor is doing to find solutions to the recent string of nine police shootings of New York City residents with mental health concerns during crisis calls, or Emotionally Disturbed Person(EDP) calls.

In 2014, Mayor de Blasio convened an impressive Taskforce to look into all the intercepts where people with mental health needs encounter the criminal justice system. Many city agencies and health care providers were on that Taskforce. Each stage of encounter—intercept—had a committee.

I was on the Taskforce committee that strategized about Intercept 1. We brainstormed for a year and came up with the recommendation to train police about how to respond to those in emotional crisis and to build two drop-off centers where police could take people in distress, now known as diversion centers.

At the meeting in February, Elizabeth Glazer was asked about whether Mayor de Blasio would revive his Taskforce on Criminal Justice and Behavioral Health.

Glazer did not publicly answer the question. But as I caught her walking out the door she said the Mayor was working on something, maybe not what we want, but some version of a Taskforce.  But politicians always say that.

Dr. Gary Belkin was grilled on why DOHMH has not yet built the two diversion centers promised in 2014. Dr. Belkin noted that Project Renewal and Samaritan Day Top Village were awarded contracts to build the diversion centers recently. But the questions are still: where will they find the land to build the massive diversion centers? And how long will the construction take? No timeline has been given.

Commissioner O’Neill was asked many questions and hit with many concerns, as one might imagine. To his credit, the Commissioner answered all questions and remained after the end of the Forum to speak to people.

Commissioner O’Neill admitted that most EDP encounters occur quickly. He noted one shooting occurred in the first 17 seconds of officers being on the scene. Usually experts say the first 3 to 4 minutes is where violence occurs.

Many people asked about non-police alternatives to answering the crisis calls.

Surprisingly, O’Neill stated that Staten Island is piloting a program where some 911 calls get screened to determine if police are needed or if social workers can field the call instead. Little is known about this program to anyone. This program was not mentioned in the quarterly NYPD advocate meetings I attend, nor is DOHMH staff familiar with this program.

Instances of projects being hidden like this show the need for the Mayor to bring a Taskforce back together to look at alternatives like this, and at least to issue reports to the public on what is already being done.

Beyond the Medical Model with Neesa

Beyond the Medical Model with Neesa
A Column by Neesa Sunar, Peer Specialist, Transitional Services for New York, Inc.
Changing the Language That is Used to Describe Us

Many of us who find ourselves in the mental health system have shared experiences as to how we got there. To speak on my own experiences, I first displayed “maladaptive,” saddening symptoms as a teen, which then led to my first hospitalization at around my fourteenth birthday. I was diagnosed with clinical depression and medicated with Zoloft. Upon returning to school, I labeled myself as “depressed,” which elicited within me a negative worldview amongst my classmates. My experiences with mental illness seemed alien to them, so my label further served to summarize my failures in forging meaningful friendships.

My condition turned for the worse when I developed schizoaffective disorder in my early twenties. Again, this diagnosis became a box I fell into, deeming me a “schizophrenic.” Adopting this label as a self-descriptor caused me to feel broken in mind and character. And even as I remained compliant with medications and psychiatric appointments, I continued relapsing, causing me to believe that my schizophrenia would haunt me for the rest of my life. Thus, the label seemed inescapable, thus sadly accurate.

My inability to work caused me to file for disability, which was an incredibly freeing experience. I began openly disclosing my illness to anyone who would serve as an audience, and even felt proud that my struggles had a name, instead of being some amorphous spiritual curse. At the same time, the label of “schizophrenic” still caused people to distance themselves from me. Perhaps my label served as a threat, indicating that I had lying dormant within me a sense of criminality.

When discovering the peer movement in 2014, beginning as a student at Howie the Harp Advocacy Center, I learned that I had been entrenched in the Medical Model for my entire mental illness “career.” I realized that I had completely internalized and unconditionally accepted the top-down dynamics of the therapeutic relationship between practitioner and consumer. I absorbed that my mental illness diagnosis served as a label that indicated who I was and the future trajectory for the remainder of my life. And that all this was an injustice.

I became appalled that I had never even heard of the Recovery Model as a counter to the Medical Model. Even in this massive city of New York, brimming with resources, I had never encountered peer specialists or Recovery Model enthusiasts. How could this be? Many of the peers I have since met proudly disown their diagnoses as descriptors, instead using more affirming language such as, “I am a person with schizophrenia,” or “I have past lived experience.” The peer community is a group of vibrant people with dynamic personalities, free from such labels. Bearing this perspective, we flourish and grow in our own recovery journeys as we influence and support one another.

Many of us peers are compelled to take action as mental health advocates in our communities. When we fight for widespread awareness of peers and the Recovery Model, we hope to challenge people in reevaluating their perspectives of those with mental illness. Part of our advocacy efforts should also include the request for creating alternative language that is person-centered, trauma-informed and affirming. A person “suffers from” or “experiences” mental illness and is not the illness itself. And what defines mental illness anyway? Descriptive words such as “crazy,” “insane” or “dysfunctional” also serve to obscure the personhood of one suffering. When insensitive language is used, a person can internalize this and develop a sense of shame and fear. This can prevent a person from reaching out to friends, family, and/or professionals. In the worst of situations, such silence can end in immense and irreversible tragedy.

As we advocate for change in language, we must also recognize that each individual has their preference for how they should be regarded. Some people prefer to be called “disabled,” while others eschew the term. Other terms can be preferred as well, such as “mentally ill,” “other-abled,” “neurodiverse,” “chronically ill,” “in remission,” or simply “a human being.” In the same way that the transgender community has fought for preferred pronouns, so too should we demand that mainstream society develops interest in engaging the mental health community with respectful language.

We each have our individual journeys towards recovery, as we leave behind our pasts to walk towards a bright future. The hope and vision that guides us in this process can be the foundation on which we stand, as we fearlessly share our stories of recovery. Part of our stories can include how we have reclaimed our lives by adopting affirming language. If we are able to incite curiosity in our audiences, we may enjoy immense success in this endeavor.

Nine Dead in Two Years in NYC and No One is Listening

Nine Dead in Two Years in NYC and No One is Listening 
By Carla Rabinowitz, Advocacy Coordinator, Community Access, Project Coordinator, Communities for Crisis Intervention Teams in NYC (CCINYC)
The Mental Health Community Demands Change

On Friday, February 23rd, 2018, dozens of community members gathered to mourn the lives of people lost in NYPD encounters in the last two and a half years.

At the memorial, we talked about the need to get the newly trained Crisis Intervention Team (CIT) officers to the scene of crisis calls.

We talked about the need for Mayor de Blasio to revive an old 2014 Taskforce to come up with other alternatives to police responding to these calls. Whether it is diverting calls to social workers or therapists to meet police on the scene, or trained peers responding in the community. We need alternatives to police responding to crisis calls.

But mainly it was a day for family, friends, and the community to mourn our nine losses.

We read the names of each life lost, and after each name was read, we popped a black balloon to signify their death.

Steve Coe, CEO of Community Access, implored the Mayor to revive the Taskforce, get all the experts in the room to figure out what is working, what is not working, and to fix this.

Below is my speech in full. At the memorial we spoke, and here we print the names of our community members so that we can remember them:

“Mario Ocasio was killed June, 2016. He was 51 years old. Mario was an uncle and a boyfriend. Mario, you are missed.

“Rashan Lloyd was killed June, 2016. Rashan was only 25 years of age when he died. Rashan was a construction worker and Rashan was raising his 4-year-old son. Rashan you are missed.

“Deborah Danner was killed in October, 2016. Deborah was well known in both the mental health and faith communities. Deborah was a regular member of Fountain House, a clubhouse in NYC. And Deborah was a long timelong-time member of Trinity Church. She participated in the poetry and knitting groups. Deborah predicted her own death at the hands of police on a blog she wrote. Deborah you are missed.

“Dwayne Jeune was killed July, 2017. Dwayne was a Caribbean immigrant. He died at 32 years of age. Dwayne was a devoted son, who often helped his mother with groceries and could sometimes be found dancing in front of a mirror in the hallway outside his apartment. Dwayne’s cousin said Dwayne was a soft-spoken, mild-mannered person who never bothered anyone. Mr. Jeune you are missed.

“Ariel Galarza was killed November 2016 when police mistook a hot sauce bottle for a knife. He was 49-years-old when he was killed. Ariel was described as a peaceful, hardworking man. Ariel was a role model for his nephews and loved dearly by his little sister. Ariel you are missed.

“Andy Sookdeo died in August 2017. He was only 29 years old. Andy took his own life when confronted with police. Andy had been a school bus driver before things fell apart. Not only did Andy die in this encounter, but police were injured as well. Andy, you are missed. 

“Miguel Richards was killed in September, 2017. Miguel was a college student from Jamaica living in NYC in an exchange program. He died at 31 years of age. Miguel was an IT expert with a bright future. Police had 17 minutes to talk Miguel down using de-escalation skills, but instead they just shouted commands at him, telling him they would shoot him if he did not comply. Maybe that’s what Miguel wanted at that moment. Miguel you are missed.

“Cornell Lockhart was killed in November, 2017. He was 67-years-old when he died. Lockhart had lived in a supportive housing residence for six years before his death. When police shot him, Cornell’s arms were down at his side and his back was against a wall. Cornell you are missed.

Dwayne Pritchett was killed in January, 2018. Dwayne was 48 years of age at his death. Dwayne was a barber. He was raising his 3-year-old son with his female partner., but left to live with his father about a week before his death. Mr. Pritchett you are missed.

Let these lives lost not be in vein. Let’s strengthen our resolve to continue the work to find new solutions to crisis calls that so many people in the mental health community face.

We demand the Mayor revive his Taskforce to find non-police responses to crisis calls before one more life is lost.