STIGMA IS A FOUR LETTER WORD

Editors Note:  NAMI wishes to thank Schizophrenia Digest for allowing us to reprint this article in its entirety.  This article may not be reproduced from our site without express written permission.

Busting Through
Leading the Fight Against Stigma

by:  David Staba

ImageStella March spent much of her working life in the advertising business, and devoted her off time to fighting for a variety of causes.

So when schizophrenia struck her family, the Los Angeles resident combined her professional background and personal advocacy into a campaign that ultimately targeted perhaps the largest obstacle facing people with mental illness—the stigma that permeates popular culture.

“I’ve been involved in advocacy since college days, for peace, against war and so on,” says Stella, who coordinates the StigmaBusters campaign of the National Alliance for the Mentally Ill (NAMI). “When my kids went to public schools here, I was advocating for more funding for education from the state and the integration of public schools. That training prepared me to work on mental-illness issues before it happened.”

“It” happened to March’s family in the late 1970s, when her son, then a student at the University of California-Los Angeles (UCLA), was diagnosed with schizophrenia.

“He was at the state hospital,” Stella recalls. “I cried my eyes out every time I left.”

She quickly channeled those emotions into battling for mental-health causes. She and other family members began banding together across the United States, building NAMI – a then-fledgling organization – into a powerful lobbying and public-information force.

The new group started pushing state and federal governments, as well as pharmaceutical companies, to fund additional research into schizophrenia. Those efforts ultimately helped produce a new generation of medications, reminding Stella and her peers of the strength in numbers.

“One of anybody can’t do anything,” she says.

After successfully working to gain protections for people with mental illness under the Americans with Disabilities Act of 1990, NAMI launched a campaign against discrimination in 1995.

One of the first steps was an attempt to enlist celebrities to record public service announcements about the issue. Stella, familiar with the ins and outs of show-business publicity from her advertising days, learned the strength of stigma first-hand.

“When it came to mental illness, all the agents and publicists and celebrities had a big wall around them,” she says. “They wouldn’t even listen.”

Finally,Mike Farrell – best known for his long run as B.J.Honeycutt on television’s “M*A*S*H*” – stepped forward and agreed to appear in a public-service announcement.

Not that many people ever saw it.

“Frankly, a lot of the networks and stations didn’t play it, or they played it at 2 in the morning,” Stella says.

Rather than trying to work within the framework of traditional media, she and other NAMI leaders decided to launch their assault on stigma from outside the Hollywood establishment, and StigmaBusters was born.

“We realized we couldn’t put an end to discrimination without addressing stigma,” she says.

The group began watching for inaccurate and insensitive portrayals in television, movies, music and advertising. Such stigmatizing characterizations triggered “StigmaBuster Email Alerts,” which encouraged NAMI members to make their displeasure heard where it would echo the loudest—in the corporate offices of the entertainment industry that produced them.

Stella stresses that StigmaBusters isn’t interested in censorship, but in education.

“They’re not going to pull back books that are published or films that are distributed – it costs too much money,” she says. “We hope to educate them so they won’t do it again in the future.”

In 1999, the Surgeon General’s Report on Mental Illness outlined the damage done by stigma.

“Stigma leads others to avoid living, socializing or working with, renting to, or employing people with mental disorders, especially severe disorders such as schizophrenia,” the report reads. “It reduces patients’ access to resources and opportunities (e.g., housing, jobs) and leads to low self-esteem, isolation and hopelessness. It deters the public from seeking, and wanting to pay for, care. … More tragically, it deprives people of their dignity and interferes with their full participation in society.”

With entertainment options flooding through a constantly growing array of outlets, StigmaBusters picks its battles carefully. Single words like “crazy,” “loony” or “nuts” don’t trigger action, unless they’re used as part of a larger pattern of stigmatization.

Instead, the focus remains on high-profile media ventures that inaccurately portray mental illness.

Two of Stigma-Busters’ biggest victories came in 2000.

After an alert called attention to the stigmatizing ad campaign for the FOX-distributed Jim Carrey film “Me,Myself and Irene” – starring the comedian as a police officer with schizophrenia – the furor resulted in drastic changes.

The same year, another alert – along with low ratings – helped convince ABC to cancel the one-hour drama “Wonderland”, set in a nightmarish version of New York City’s Bellevue Hospital.

Another triumph came in the field of advertising. Nestle’s line of Tasty, Tangy Taffy Bars featured wrappers bearing distorted cartoon faces of characters with names like “Psycho Sam,””Loony Jerry” and “Weird Wally.” Two alerts and even a letter from former First Lady Rosalynn Carter convinced Nestle to repackage the candies, minus the stigmatizing names and cartoons.

In the fall of 2004, StigmaBusters went after two entertainment-industry heavyweights.

In late September, CBS aired “Dr. Phil: Families First,” a two-hour primetime special during which pop psychologist Dr. Phil McGraw told the parents of a troubled child to “go fishing,” rather than seek medical treatment, even though the boy showed signs of possible bipolar disorder.

“Not only did the show represent a breach of professional ethics, but also, in the opinion of many, malpractice,” read a letter co-signed by NAMI Executive Director Michael J. Fitzpatrick.

CBS CEO Leslie Moonves responded with a letter of apology, while McGraw wrote to say he hadn’t intended to downplay the importance of professional help.

Around the same time, Universal Orlando Theme Parks launched an advertising campaign for its “Halloween Horrors Events” that pictured a man in a straitjacket with the tagline, “What’s your breaking point?” A press kit sent to reporters included a committal form to a fictional psychiatric ward and a straitjacket.

StigmaBusters responded with an alert pointing out that the notion that someone can be “driven insane” by fear, as well as the straitjacket imagery, promote archaic stereotypes and stigma.

While Universal continued its campaign, the controversy led other local Halloween-themed promotions with stigmatizing connotations, such as an “insane asylum” haunted house, to “clean up their act,” Stella says.

The campaign also strives to be proactive. Through a connection with the Writer’s Guild of America, which represents the people who produce the screenplays of most movies and television shows, Stella distributed an educational brochure to the group’s 8,000 members.

“There was a paragraph about each sort of mental illness and about what sort of language hurts,” she says.

StigmaBusters also uses that connection with the Writer’s Guild to quietly encourage sensitivity.

“When a film comes out that gives a very inaccurate portrayal, I can send a letter and I’m able to get it through the writer’s guild and explain the hurt, so that hopefully, they won’t do it again,” she says. “Instead, we hope they’ll use some balance.”

StigmaBuster Alerts also call attention to positive, accurate portrayals of people with mental illness, such as the film A Beautiful Mind and an article in the January 2005 issue of Reader’s Digest, which described a Florida man with schizophrenia who got a job at a local restaurant through a local NAMI-sponsored clubhouse.

“We protest or we praise,” Stella says. “We have to protest at times, but we love to praise. This article really proved that sometimes, good things are going on.”

That sense of optimism keeps her going, believing that change will come, even if attitudes adjust gradually.

“With racism and HIV and cancer – which for many years wasn’t discussed and was hidden – the stigma has dissipated,” she says. “With racism, there’s still stigma but it has been reduced. There’s certain language people don’t dare to use. I think eventually, the same thing will happen with mental illness.”

Borderline Personality Disorder: Stories of Hope

An illness I had no idea about a year ago happens to be a topic that draws many to this blog as they search for information.  NAMI has posted the following article that gives a brief synopsis of BPD and tells the story of three individuals who have recovered and are now leaders in the fight to educate the public and fight the stigma that is still so prevalent in our society.

To read an excellent article I ran last month please visit here. Allan

Reproduced with permission from NAMI.

by Diane and Jim Hall

Boderline Personality Disorder (BPD) is an illness that centers on the struggle to manage emotions: the symptoms include chaotic relationships, rage, self harm, fears of abandonment and substance abuse. In 2006, NAMI voted to include this highly stigmatized and misunderstood disorder as one if its five mental health priority populations. Two years later, in 2008, the U.S. Congress resolved that May is Borderline Personality Disorder Awareness Month. Today we know that with correct diagnosis and intervening effective treatment, people with BPD do recover.

Through awareness, persons diagnosed and in treatment for BPD are leading an active mission of hope.

There are now many outstanding individuals in BPD recovery leading organizations and movements to educate the public and dispel the stigma and biases about this illness based on decades of misinformation.  Here are the stories of Tami Green, Kiera Van Gelder, Amanda Wang and Amanda Smith:

While addressing a Congressional briefing about her illness, Tami Green of Houston said, “Twenty years ago, I walked these very halls, lobbying and educating Congress.” The illness ravaged her career, her health, her family. “Why am I here?” she asked. “I am here because you don’t know about this illness. I would not be here, alive, if I had not been diagnosed with borderline personality disorder and received the treatment I have been undergoing. This illness is highly treatable, and those of us who have it can have a life worth living.” Tami has since resumed her career as a life coach, become a NAMI Peer-to-Peer educator, a NAMI Connections Peer Recovery and Support Group facilitator and a national spokesperson for BPD.

Kiera Van Gelder of Boston, featured in the BPD documentary Back from the Edge, advocates and educates about the disorder through speaking engagements and publications. Her first book, The Buddha and the Borderline, will be released by New Harbinger Publications in June 2010. Kiera strongly advocates active collaboration between treating professionals and those who have been successfully treated. “As the patient leaves the role of ‘disabled’ and comes to shed the BPD label, he or she can then become an educator,” Kiera aptly states. “BPD recovery ultimately comes to the transition from believing one is broken and bad to that of being whole and good—from being incapable to capable. The need for evidence in the form of lived recovery is critical.”

Amanda Wang of New York, organizer of a peer-led support group for BPD consumers, spoke at a National Education Alliance for Borderline Personality Disorder (NEA-BPD) conference at Yale in May of 2008. She recounted her frightening journey of 13 years in treatment before her BPD diagnosis: “It made sense. It was like a breath of fresh air.” Through treatment, she learned to ”think pro-actively, pragmatically, concretely; to stay in the here and now instead of the past; to assess, to learn, to build, to track, to prioritize.” Amanda agrees with Kiera that those with the disorder “must realize our potential to become enlightened leaders. We have the opportunity to challenge the bold and subtle biases, prevailing stigma and misunderstandings. We have the opportunity to find solidarity in each other and not be ashamed of who we are and what we are diagnosed with. We become the very hope we are looking for.”

Amanda Smith is the executive director of the Florida Borderline Personality Disorder Association. Amanda and her organization are serving professionals, families, consumers and the general public with regularly scheduled programs, activities, workshops, social events and a newsletter.

This summer, NAMI has invited Marsha Linehan, Ph.D., a leading expert on BPD and designer of Dialectical Behavior Therapy (DBT), to present the Research Plenary at the NAMI National Convention in San Francisco on July 8, 2009. The NEA-BPD Web site offers a discussion on the evidence-based treatment of DBT designed by Dr. Linehan, as well as numerous other BPD-related resources, videos, conferences, family guidelines and the Congressional Resolution.

NAMI has also created a new brochure on BPD, available for purchase in the NAMI Store.

An electronic version in PDF format is also available for download.

With the growing partnership of NAMI, NEA-BPD, active consumers and other public and private supporters, advocacy and awareness will expand beyond the month of May. Come join us in July in San Francisco. Together, our awareness and action will lead to hope.

God, Where Are you?

This was the first article I “wrote” for this blog.  The reality is I wrote it for another blog and chose to use it here.  A little over a year later I’m running it again.  I pray God might bless it.  Allan

GOD, WHERE ARE YOU?

I believe this has been the cry of many a believer through the centuries. In the book of Psalms David cries out…..

Psalm 13:1 How long, O LORD? Will you forget me forever? How long will you hide your face from me?

There are those valleys, trials, or dark times in our lives that have caused us to wonder if the faith we were clinging to was actually true. The God who said I will never leave or forsake you at times seems to have done just that. God placed these words in Scripture because they are true even when everything in our life screams just the opposite.

Joshua 1:5  No man shall be able to stand before you all the days of your life. Just as I was with Moses, so I will be with you. I will not leave you or forsake you.

Hebrews 13:5 Keep your life free from love of money, and be content with what you have, for he has said, “I will never leave you nor forsake you.”

When these “dark” times come quite often what happens is we start to focus on our circumstances and feelings and we begin to lose hope. Sadly, for many of us when these “dark” times come we drift away from God. These “dark” times have visited believers all through time.  Job’s counselors concluded his trials must have been because of something Job had done. Some sort of sin or failure in his life. Yet we read in Job 1:1 …..

There was a man in the land of Uz whose name was Job, and that man was blameless and upright, one who feared God and turned away from evil.

For many years I equated suffering to diseases like cancer or maybe being in a terrible accident. I didn’t equate suffering with the mind, which is exactly what happened to me. So when I began to experience my “dark” times with panic I was not prepared for it in any way at all. I had bought into the lie deep in my Spirit that emotional suffering was a sign of a spiritual problem with the afflicted and they needed to latch on to God’s promises. This thinking set me up for a big fall.

So I began to try to reason and figure out what was happening to me. This led to years of me trusting my own heart and creating for myself what amounted to many false truths. Today in Proverbs I read this sobering verse.

Proverbs 28:26 Whoever trusts in his own mind is a fool, but he who walks in wisdom will be delivered.

In my mind, God had not only deserted me but He had failed me. As a result I determined that I would do what was necessary to protect myself because the reality was I didn’t trust God. I realize now the trap I fell into. At the same time, it didn’t help when I got so many mixed messages from sincere believers who shared their thoughts on why I was suffering.

Looking back, my life during those years was not in vain. I had unwittingly bought into a false set of beliefs that I had created to help me cope with my suffering. Years ago, God showed me He wants us to not simply cope and struggle through life, He wants the best things for us.

I believe for those who read these words who may be in a place like I have been and to a degree still am, if you were totally honest with yourself you might admit that you feel like a failure, that God has indeed abandoned you, and that there is no hope. Yet we still attend church. We do good works. We help others. But at our core we are hurting so badly we don’t know what to do. So we simply keep quiet and survive the best we can.

In my mind, I believed that in order for God to help me, it would have to be something “spiritual” that would be the solution He offered. I fought against the idea of medication or me even having to participate in my recovery by facing some of my fears. It didn’t seem fair and I made myself a victim. And the years went by because I did the same old thing and got the same old results.

During those years I led Bible studies at church. I was part of leadership. God used me in my broken condition but He didn’t desire that I remain there.

Jeremiah 29:11 For I know the plans I have for you, declares the LORD, plans for wholeness and not for evil, to give you a future and a hope.

When we feel abandoned by God and see others in the Body doing well we begin to think all sorts of things that aren’t true and not only that, we have to contend with the powers of darkness who are delighted to see us in such darkness and confusion.

So what do we do when we find ourselves in “dark” times? What I did was to buy every self-help Christian book I could, figuring if I read a certain chapter there would be a magic solution for me and God would touch me. I even thought that as each Christmas and birthday that came up, maybe God would heal me as a gift. Finally, I started going back to Calvary Chapel Costa Mesa on Sunday nights. I was saved there and I figured God’s presence was strong and I would attend afterglows. No luck! Finally, one Sunday night as I was sitting in the service, God spoke to me in a very quiet way and told me I didn’t belong there. I got up and went home and didn’t return. I had resorted to superstition I was so desperate.

I still am on my road to recovery but I’m here to say there is hope for all of us. God’s way of working in our lives is not something we can predict but He is more than willing to help out. That might be through honest sharing with a Pastor, trusted friend, or in some cases a professional Christian counselor.

What the outcome for each of us will be is a mystery to me but I do know that I am in such a better place now than I have been for the last 15 years. Instead of looking back with regret, I seek to look forward, one day at a time.

I must share that for me, God pointed out sin in my life He wanted me to take care of. I was filled with anger and unforgiveness and I needed to make those things right. We all need to examine our hearts and lay them naked before God.

He has never seen His children as useless or as garbage. That’s simply a lie. He sees us as His precious children who loves us more than we will ever imagine. Don’t make the mistake of relying on your feelings. They will fail you. Hold on to His promises. He said He has come to give us life, and that more abundantly.

The road isn’t always easy, but God is always faithful.

Joshua 1:5 No man shall be able to stand before you all the days of your life. Just as I was with Moses, so I will be with you. I will not leave you or forsake you.

Hebrews 13:5 Keep your life free from love of money, and be content with what you have, for he has said, “I will never leave you nor forsake you.”

We serve a mighty God and some of His greatest warriors are sitting out and He’s asking you to come back so He might show you the amazing things He has for you.

I am a lay person, speaking from my personal observations and experiences. God bless!!

The Breaking Of The Storm- Streams In The Desert, June 28th

Jesus asleep as storm rages.

Jesus asleep as storm rages.

“And there arose a great storm” (Mark 4:37).

Some of the storms of life come suddenly: a great

sorrow, a bitter disappointment, a crushing

defeat. Some come slowly. They appear upon the

ragged edges of the horizon no larger than a

man’s hand, but, trouble that seems so

insignificant spreads until it covers the sky and

overwhelms us.

Yet it is in the storm that God equips us for

service. When God wants an oak He plants it on

the moor where the storms will shake it and the

rains will beat down upon it, and it is in the

midnight battle with elements that the oak wins

its rugged fibre and becomes the king of the

forest.

When God wants to make a man He puts him into

some storm. The history of manhood is always

rough and rugged. No man is made until he has

been out into the surge of the storm and found

the sublime fulfillment of the prayer: “O God,

take me, break me, make me.”

A Frenchman has painted a picture of universal

genius. There stand orators, philosophers and

martyrs, all who have achieved pre-eminence in

any phase of life; the remarkable fact about the

picture is this: Every man who is pre-eminent for

his ability was first pre-eminent for suffering.

In the foreground stands that figure of the man

who was denied the promised land, Moses. Beside

him is another, feeling his way–blind Homer.

Milton is there, blind and heart-broken. Now

comes the form of one who towers above them all.

What is His characteristic? His Face is marred

more than any man’s. The artist might have

written under that great picture, “The Storm.”

The beauties of nature come after the storm. The

rugged beauty of the mountain is born in a storm,

and the heroes of life are the storm-swept and

the battle-scarred.

You have been in the storms and swept by the

blasts. Have they left you broken, weary, beaten

in the valley, or have they lifted you to the

sunlit summits of a richer, deeper, more abiding

manhood and womanhood? Have they left you with

more sympathy with the storm-swept and the

battle-scarred? –Selected

The wind that blows can never kill

The tree God plants;

It bloweth east, it bloweth west,

The tender leaves have little rest,

But any wind that blows is best.

The tree that God plants

Strikes deeper root, grows higher still,

Spreads greater boughs, for God’s good will

Meets all its wants.

There is no storm hath power to blast

The tree God knows;

No thunderbolt, nor beating rain,

Nor lightning flash, nor hurricane;

When they are spent, it doth remain,

The tree God knows,

Through every tempest standeth fast,

And from its first day to its last

Still fairer grows. –Selected

Saturday Night Live- Praise &Worship, June 27th, 2009

I’ve gone back many years to share a few Maranatha Praise songs that stand the test of time.  I went ahead with adding a guilty pleasure…. a song most wouldn’t admit to liking.  In somebody’s world maybe it’s considered praise and worship!  God bless!

Song List

1.  Let It Rain-  Michael W. Smith

2.  Holy Holy-  Tim Hughes

3.  In His Time-  Maranatha Singers

4.  As The Deer-  Maranatha Singers

5.  Here I Am To Worship-  Not sure who sang this.

6.  You Are My All In All-  Nicole Nordeman

7.  O For A Thousand Tongues To Sing-  David Crowder Band

8.  Who Am I?-  Casting Crowns

9.  Shackles (Praise You)-  MaryMary

10.  Fix You-  Coldplay

11.  All Who Are Thirsty-  Kutless

12. Guilty Pleasure

Prayer Requests & Praise Reports, June 26th

“Satan trembles when he sees the weakest Christian on his knees.”  William Cowper


New Prayer Request

Dorci- I have two different headaches, one of them every day, (for a little over 3 years) the other at least a few times a week. (for about 8 monhts) It’s very draining physically and emotionally. Sometimes I don’t even go to church on Wednesday nights because nights are when the headaches are the worst.

Past Prayer Requests

Dorci-  I don’t want to have happen to others what has happened to me. I don’t know if anything will come of this, but I’m going to start praying and asking the Lord if there’s anything He would have me do to reach out to them. I’ve had a break from serving for a year and have recently started praying about what, if anything, the Lord would have me do next.

Shawn Sells–  Keep Shawn in prayer for wisdom as he seeks to continue his ministry to those with mental illness in his church.

Anne–  Hello Allan – I was very touched by your story as well as Shaun’s reporting of stepping out in faith to find a way to support those struggling.
I am currently in the darkest depths of depression I have yet experienced – can’t imagine things getting any darker. Bringing myself to even type an effort. But you were so kind to think of me that I did not want to leave you hanging without thanking you. May God grant me freedom from my depression and anxiety as He has so mercifully done to you – so much so that you can be a support and comfort to your mom and son.
I am feeling more and more like an inconvenience to everyone.
Pray for me.

Okie Preacher–  Please keep Okie Preacher in your prayers. He has been diagnosed with mononucleosis.

Tomorrow, he will be seeing a heart Dr. He has been experiencing shortness of breath, dizziness, and nausea.

Allan–  Three days ago Stephen and his girlfriend let us know there is a baby on the way. I was in shock initially and didn’t respond as I would have hoped. We are in a much better place and are supporting them as they move forward. Please pray that this child is born into the best environment possible.

I’m going to be a Grandfather! :)

Okie Preacher- My wife and I have been going through some very difficult times since we left our last church pastorate. I would rather not go into detail at this time, although I may in the future.

There are many things that are currently distracting and many hurts from the past that need healing. I have been advised by a good friend to perhaps consider taking a sabbatical for a period of prayer and reflection, which I am inclined to do so at this time.

Please pray for us as we wait on God for healing, guidance, and direction.

Dorci- I would love it if people could pray that our son Eric would fall in love with Jesus and would follow Him with all his heart. Thank you.

miniErunner- Please pray for my best friend’s father. He was just diagnosed with throat cancer and will be starting intense chemo within the next few weeks. Please also pray for his wife and 2 daughters. Pray that they will stay strong through all of this. Update – Surgery was done and his voice box was removed.  He will now undergo further treatment.

Set Free–  Please keep us in prayer we are in need of a place to worship. Things have taken place where we share a building and I believe they are looking for ways so that we can move from there. I know it has to be God who opens the doors to where he wants us to be. I also know that the enemy does not like the progress we have made in spreading the Gospel. Thanks again!

Cash–  Hello, friends. May I ask you to pray for me and my family. I just lost my job on Tuesday. It was a good job with really good benefits, so we’re job searching now.

Dorci–  I have some weird issues with my lower legs, swelling, pain, etc. They’ve done ultrasounds but haven’t found anything.

Dusty– Continued prayer for deep depression.

Rachel–  Continued prayer as she struggles with bi-polar disorder.

Past Praise Reports

Allan–  The biopsy I had came back negative.

Susan–  Allan – I wanted to take this time to express my appreciation to you and your prayer partners in keeping my husband in prayer. This Tuesday is another exciting day for us they will remove the catheter from his chest where he was hooked up for the dialysis treatment. I learned that only 6% make it off of dialysis so with that in mind I know that it was a miracle of God and the prayers of Gods people that he made it to where he is at now. I only share this so that others can have hope that God is on the throne and we don’t always understand his ways which are not our ways. I believe our work is not done here in our ministry and only God knows why he brought healing to my husband. All I know is that I’m so grateful for the opportunity to continue on for the work of God’s Kingdom & to serve God’s people. I’m also happy to hear the news of your Son Steven & your Mother. We will continue to keep everyone in our prayers. Thanks Allan to you and my beautiful Sister.

Love Always,
Susan (Your Favorite Sister In Law)  :)

Allan- My mother’s surgery was successful.  She was without pain and walking the following day.

Long Term Prayer Requests

Natalie Tan–   She is battling an eating disorder and has a tough battle ahead of her. There is a new article posted that is about her. She puts a face to eating disorders and is a young woman that will need prayer.

Nene – Prayer for her father to be saved and to come to a place of peace. Father and brother have been estranged 27 years.

Dorci–  I just have a praise report that in almost 3 years of suffering with daily headaches I am finding some relief. I still have them every day, but I have times during the day when I don’t have one at all, and at night they are usually not as bad as they have been.

anne–  Keep anne in prayer as she has moved and struggles with dark bouts of depression and deals with anxiety. There is much trouble with extended family and anne will need a job.

Allan– The wife of our nephew has MS .

Allan–  We have a niece who is coming out of ten years suffering with Anorexia. She is now battling depression and would covet our prayers. She is a beautiful young Christian mother with a fantastic husband and two adorable young boys.