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Sunday, July 10, 2016

I am grateful to DBSA

I am grateful for what DBSA gave me. Genuine hugs. Love. A place to belong. An understanding I was missing and needing. Healing.
- Steve

"We're keeping the light on for you." - DBSA Jackson

Tuesday, July 5, 2016

Peer specialist? What's a peer?

The Peer Specialist: A Vital Professional in Mental Health Care

Brewing within my heart is something of a heroic character.  My calling is mental health awareness and stigma fighting.  I want to become directly involved in the lives of people who suffer.  I want to get to know them on a personal level, and create a rapport where I make a long-term commitment to that person's health and wellness.  I want to make a difference in this world.  And if I can change even one life for someone, that is worth more than gold to me.

Luckily, I fulfill this desire of mine by working in non-profit.  While the salary could always be better, I work with people who are similarly passionate about social welfare.  My agency offers housing to people with mental illness disabilities, and we additionally provide case management services to an involved degree.  We coordinate everything from their doctors' appointments to monthly checks.

And my job specifically?  I am employed as a "peer specialist."  A peer specialist is a mental health professional who has personal lived experience with mental illness.  Peers have suffered mental strife themselves, and so they are able to understand and empathize with their clients.  This type of experience cannot be learned in university.  And so, peers have expertise that doctors and social workers do not.

It is a pity, that the peer career is all but a hushed secret in the field of mental health.  Observe: I grew up in Queens, New York… began therapy services at the age of ten, started medications at fourteen, developed schizophrenia at twenty-two, went on disability at twenty-six.  There were many medications tried, ninety pounds gained, seven hospitalizations in all… if you were to add up the time I've lived in hospitals, you'd have twenty-seven weeks.  Some of those stays did not grace me with a daily fresh air break of fifteen minutes, while other places were more benevolent.

Yet never did I hear about peer specialists.  An absolute shame, given that I even live in that massive metropolis of New York City.  If peers are unknown here, how dismal it may be in other communities around the world.  Perhaps I come across as snotty New Yorker here, but I am more concerned than anything.

I learned about the peer career when I was in a psychiatric rehabilitative program in 2012.  Once I heard about it, I instantly wanted to become one myself.  I applied to a peer specialist training program at a school called Howie the Harp Advocacy Center, and was accepted.  In 2013, I attended classes at Howie five days a week, totaling to 500 classroom hours.  Following was a 12-week internship at an agency in Queens, where I was then hired for a full-time position.  At Howie, my education was extensive, and many prominent people in the peer specialist community gave guest lectures, in addition to the curriculum imparted by the regular staff.

The very name of the school, Howie the Harp, is named after a specific person who was one of the first pioneers in the peer movement.  Howard Geld was psychiatrically hospitalized as a teenager in the late 60s.  At age seventeen, he left New York and relocated to the west coast, where he eventually became involved in the Insane Liberation Front.  During his life, he was involved in mental health advocacy efforts on the east and west coasts.  He earned his moniker of "Howie the Harp" because he was a street performer on the harmonica.  In 1993, he became the Director of Advocacy for a social service organization in New York called Community Access.  He garnered funds to start a peer specialist training center, slated to open in 1995.  Unfortunately, he passed away two weeks before the school opened.  The school was then named after him in his honor.[1]

While attending Howie, I learned that there is an actual peer movement, which strives to create awareness about mental illness akin to a civil rights movement.  Over the years, it has been called various titles: the Psychiatric Survivors movement, the Peer Movement, the Consumer/Survivor/Ex-Patient Movement, and so forth.  The overall sentiment is captured in the statement of "Nothing about us without us."  So often, psychiatric clients are stripped of their rights, whether it be within the walls of institutions, or in the office of their psychiatrist.  People are forced into treatments they don't want for themselves.  People feel intimidated by doctors, and feel forced to take their medications.  And then there is stigma.  That pervasive societal attitude that disparages and demeans those who have a diagnosis.

Hearing about this social effort has fueled my own desire to get involved in the movement.  Now today, I have various online ventures where I strive to help this mission.  I run a Facebook wellness group, called "What is Wellness?  A Mental Health Discussion Group."  We have monthly meetups in New York City, and my hope is that there will be regional meetings as more members join.  I also keep a personal blog, and am a contributor of essays and poetry to various sites.  Much of my writings are inspired by the mental illness experience.

Additionally at Howie, I learned about the "recovery model," which is in stark contrast to the "medical model."  Typically, when one is physically ill, s/he will go to the doctor to remedy the situation.  The doctor will prescribe a medication or perhaps surgery and whatnot, and the treatment is determined successful if the person's symptoms are eradicated.  However, this is not sufficient for achieving mental health wellness.  For example, if one experiencing mania, taking medications may successfully remove this behavior.  However, side effects could cause one to have a flatness that numbs one to all emotions, or perhaps the person will gain a lot of weight.  There may even result permanent physical maladies.  Very often, psychiatric patients are told by professionals that they will "never be able to have a full-time job," or they'll "never be able to be in a relationship."  Such negative predictions only serve more to defeat a person's spirit. 

The recovery model maintains that the medical model of mere symptom management is not enough to ensure true mental wellness.  Side effects can often compromise one's quality of life to the point that the "cure" still causes substantial suffering.  With the recovery model, the idea is that recovery goes beyond this.  Everyone is entitled to living a fulfilling and fruitful life.  Those with mental illness should be encouraged and supported to reach for this level of wellness, no matter how "severe" their condition may seem.

I love being a peer, especially because I can be open with my having mental illness.  Specifically, I am diagnosed with schizoaffective disorder.  This condition profoundly impaired my life during my twenties, and I also suffered from depression as a child.  I developed schizophrenia specifically at age 22, while in conservatory preparing to be a professional violist.  I was forced to abandon a performing career, and took over a year to recover.  I then attempted to restart my life by attending school to become a public school music teacher, but these plans were thwarted when I again had a psychotic attack.  When I attempted to return to school, my professors were leery about letting me return to school.

"You're rushing start school again."  An attitude of annoyance

"Are you safe around children?"  An attitude of caution and alert.

These attitudes made me ashamed of my illness, and discouraged me from the teaching career.  What kind of life would it be, if I had to live in the "mental illness closet" for the remainder of my professional life?  The pressure would inevitably cause pressure and relapse, and would only confirm the attitude that I am "broken" and "dangerous."

Being a peer specialist is incredibly liberating.  Not only can I be open about my diagnosis, but my experiences are even seen as a strength.  No longer do I need to feel that shame, but instead I can feel pride.  Pride, that I have overcome the devastation that my mind once inflicted upon me.  Gratitude, that I have many stories to tell and memories to recall which can help ease the pain of others.

Whenever I meet a new client at my job, I immediately make known what I am.

"Hello, I'm Neesa.  I am a peer specialist.  Do you know what a peer is?"

Oftentimes, the client does not know.  And so I explain.

"A peer is a person who has mental illness themselves.  I myself have a diagnosis of Schizoaffective disorder.  I've been hospitalized seven times.  I have been on disability since 2011.  So I know where you're coming from.  I know how this system can really wear you down, trying to juggle the system of public assistance and Medicaid and psychiatrists… I've lived it.  Just know… I'm here so that I can relate to you.  I know where you're coming from."

Whenever I say this, I feel this invisible wall melt between me and the client.  The client seems to become more relaxed, and it immediately becomes easier for me to casually chat with the person.  My hope is to strike a chord within the person, wherein s/he can feel safe and open.  On the job, I have learned that this type of relationship allows me encourage and inspire a client to reach for greater wellness and recovery in their own lives. This truly is the crux of the peer profession.

There are various other responsibilities that keep me busy on the job as well.  I act as an advocate by accompanying clients on errands on public transit.  Very often, they will need assistance with getting government documents such as birth certificates and non-driver's IDs.  The process of getting together the correct paperwork, and also traveling and waiting on lines can be very stressful for clients.  But by being there with them, their anxiety is eased.  I also visit clients at their homes and teach skills such as cooking and budgeting.  The intent is that clients will learn skills that allow them to live with greater independence.

The greatest fulfillment I experience as a peer is developing that one-on-one relationship with the client.  Conversing with them, getting to know them, and ultimately helping them feel more confident.  Helping them to realize that they are in the driver's seat of their own personal recovery and independence.  I also try to personally "practice what I preach."  I aim for a high level of wellness in my own life, so as to be an example of it to my clients.  I personally lost fifty pounds.  I eat vegetables and eat no candy.  I work out.  I have  hobbies and creative pursuits.  I have many friends.  To talk about wellness is one thing, but to actually live it is something else.  I attempt to demonstrate this, recovery, in my own life.

I also channel my creativity into my current peer work.  I run an all-day recreation group at the office on Sundays, and clients are free to come and chill.  (During the week, the office is primarily used for office and administrative purposes, and clients do not go there typically.)  We watch movies and YouTube videos, and I also have a collection of high-quality art supplies, ranging from colored pencils to thick papers, collage supplies and even clay.  All of these supplies I obtained free of charge from a wonderful non-profit organization called Materials for the Arts.  I utilize my musical background by facilitating groups where we write songs together.  I installed a small library, so residents enjoy reading.  I even give individualized birthday cards and a small, inexpensive present each month.  I take care in choosing a card that each client would enjoy, and I scrounge around trying to find free items that I can use for gifts.

I am happy to work for an agency that allows for me to make my work my own.  So often, mental health recipients are bombarded with doctors and administrative paperwork and therapy groups, which can be very clinical and discouraging.  I like to say that my job as a peer serves to "humanize" the services my agency offers.

My hope is that there soon will be widespread awareness about peer specialists.  It is a wonderful career for a person with lived experience.  Additionally, there are specific positions that are available for those with a substance abuse history and/or forensic background, in addition to mental illness.   For me, being a peer empowers me.  It now gives me a mission in life.  I want to fight stigma.  I want to give voice to those who suffer in silence.  I want to unite all of us together.

Because together, that is how we change the world.


Neesa Suncheuri works as a mental health peer specialist at a housing agency in Queens, New York.  She is the founder of a Facebook discussion group for peer specialists and other recovery enthusiasts, entitled "What is Wellness?  A Mental Health Discussion Group."  Much of her creative inspiration is rooted in her now-tamed schizophrenia.  She writes poetry and fiction, and maintains a blog called Unlearning Schizophrenia.  She is also a singer/songwriter, and an enthusiast for the German language and culture.  Follow her on Twitter at @neesasuncheuri

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