Monday, October 21, 2013

Never Again: A Family Confronts Nazi Germany and Mental Illness

Today, I feel like I’ve just experienced the death of someone in my family.

Years and years after the fact, as I explore my family history, the feeling somehow holds true.


I didn’t know what the name meant. It was a reference in the 1919 Mecklenberg census that I found online. It is located in area on a map of Germany that appeared to be north of Schwerin. What I didn’t know initially was that it is the name of a well-known asylum for people living with mental illness.

In the census, the word appearing after everyone’s name in the household is “kranker,” which translated means “ill.” A light bulb goes off in my head. Within my family, it would seem that history repeated itself.

Last night, I confirmed that my great-grandfather was institutionalized in Germany. My grandfather, who immigrated to a new world in New York City, also couldn’t escape mental illness, which spanned an ocean and caught up with him in the prime of his life. An almost identical scenario marked their lives in adulthood, although with one terrible difference.

The possibility exists that my great-grandfather was murdered in Germany. In 1939, Hitler began ensuring that the mentally “challenged, handicapped and elderly” (essentially those who could not be an economic asset to the country), were to be “euthanized.”1 Was that my great-grandfather’s fate at 86 years of age or did he pass away of natural causes beforehand? These are the questions that I am compelled to find the answers to.

To some degree, I’ve brought this on myself, having gone on an expedition to uncover information about our family in Germany that I may never hear first-hand from other family members. So it comes down to what one can glean from records that, as time goes on, paint a picture of lives laced with tragedy.

As my research continues, I wonder if there were others in our line that made Sachsenberg or other German institutions their home. My quest to canvas the countryside in search of living family members has not been without effort and thus far has been fruitless. It is striking to me that in other countries we are surrounded by loving vibrant family members while in Germany, there continues to be an eerie silence.

From an artist's rendering of the exterior, Sachsenberg looks attractive enough --maybe even better than the Newtown complex2 where my grandfather ended up residing for 24 years. It is perched by a lake on a high hill.

Things went well for my grandfather—for a while. He built a middle-class home in one of the wealthiest towns in the country. He realized his American dream. Then came the fall, the darkness, which ended in a potter’s field in an unmarked grave.

 One can only reflect and ask, what led most of our family to come to be living a prosperous life in 2013? The most straightforward answer: It was the result of the sacrifices made by our ancestors. We have our grandparents to thank, as they are the reason why we now live in the greatest country in the world. They would be so proud of the accomplishments of their children, grandchildren and great-grandchildren.

Discovering Sachsenberg struck a powerful chord within me. It connects my family to a pivotal time in history. I’m quite certain that many visitors to the 4th floor of the U.S. Holocaust Museum in Washington, D.C. wipe away tears when they look at an exhibit that contains a

Sachsenberg bed frame or an embroidered blanket – tangible reminders of the Holocaust’s mentally and physically compromised souls who fell victim to Hitler’s propaganda, which dismissed them as “life unworthy of life.”

Mental illness may reach across generations, but may history never repeat itself in how we treat those who live with it.

The author has since determined that her great-grandfather died in 1941 at the height of the Nazi euthanasia policy. She is planning a trip to Germany soon. “I believe that I now know what happened but feel that I must go there personally to complete our story,” she wrote NAMI. Her family has asked that this article be published anonymously.

1 Sachsenberg was one of several centers where the policy was carried out from 1939 to 1945. Residents were sterilized and often murdered. In Germany overall, more than 200,000 people, including children, died under the “euthanasia” policy.

2 Faitrfield State Hospital was located in Newtown, Conn. from 1931 to 1995. At its peak, the complex had 4,000 residents.

Wednesday, October 16, 2013

Are You Haunted by Halloween Stigma? Here’s What to Do

By Bob Corolla, NAMI Director of Media Relations

It is Halloween season again.
For all the fun that can be had carving pumpkins, eating candy and dressing in costumes, unfortunately October is also a month with Halloween stigma. Typically, horrors involve “haunted asylum” attractions with depictions of residents as violent monsters. In other cases, some stores sell “mental patient” costumes with straitjackets. These images perpetuate stigmatizing, offensive stereotypes of people living with mental illness.

NAMI loves Halloween as much as anyone else. But would anyone sponsor a haunted attraction based on a cancer ward? How about a veterans' hospital with ghosts who died from suicide while being treated for posttraumatic stress disorder (PTSD)? Or one based on racial or ethnic stereotypes?

The U.S. Surgeon General has identified stigma as a major barrier to people reaching out for mental health care when they need it. People living with mental illness often internalize stigma as well, impeding recovery.

Mental Patient Costumes

Two British retail stores—one owned by Wal-Mart, Inc.—recently pulled mental patient costumes from shelves and apologized after protests.

Unfortunately, the sale of mental patient costumes continues in many U.S. stores. Last year, NAMI singled out, which claims to be the world’s largest costume retailer. This year, shaming extends to seasonal Spirit Halloween stores (owned by Spencer Gifts). In the face of these large retailers, what can one person do?

  • Send a protest to such companies through website “contact” features—or after a little sleuthing, to the company’s CEOs or public relations executives. These email addresses are sometimes listed under “corporate” or “investor” information.
  • Post a comment on the company or store Facebook page.
  • Contact the managers of local stores that carry such costumes and ask politely that they be removed. Enlist others to do so as well, and mention that British stores have already done so—including a chain that was Wal-Mart-owned. Local stores for and Spirit Halloween can be found on their websites. Ask that they share your concern with regional managers to be communicated to company headquarters.

However, recognize that it is a tough battle that involves advancing by inches over time rather than yards or miles. A Salon commentary celebrated the right to protest, but noted that the problem is bigger than Halloween: “If you want to be an insensitive jackass, you’re always going to have plenty of opportunity,” wrote Mary Elizabeth Williams. “If you think it’s cool to parade around in a manner that’s racially tone-deaf or clueless about mental illness, chances are you’re not confining your idiocy to one night a year anyway.”

Haunted Asylums

One of the first stigma reports received this year involves the Psychopath Sanctuary “Devil’s Folly Haunted Barn” near Allentown, Pa. Radio advertisements have proclaimed:

Alert, alert, alert! Several mental patients have escaped the state hospital. They are rumored to be hiding in an abandoned barn. Local residents have been reported missing. Neighbors of the barn have heard strange noises near the barn and believe people are being tortured there.

As reported in the Allentown Morning Call NAMI Lehigh Valley haslaunched a protest. So far, the response from the attraction operator has been dismissive. If you would like to support NAMI Lehigh Valley in their efforts, please send a polite email to the Devil’s Folly explaining why stigma is a serious public health problem:

This brand of haunted house is not confined to Allentown. For example, there’s one called the Insanitarium in Pinson, Ala. But what about Halloween attractions that might haunt your own community?

General Advice

  • Contact sponsors personally. Start a polite dialogue about how to resolve the controversy and to work together in the future. Ask them to remove offensive parts of any attraction or advertisements. In some cases, changing a name and using “haunted castle” and generic “monster” themes may be all it takes. Use this time as an opportunity for education. Remember to be flexible and patient. In some cases a sponsor can’t make changes immediately but will agree to do so in the future. If so, ask for a public statement or letter.
  • Alert other NAMI members, family and friends to phone, send letters or e-mail the sponsors. Utilize social media like Facebook or Twitter. Organize local leaders in the mental health community, especially psychiatrists, hospital CEOs or clinic directors.
  • Contact local newspaper editors and television news directors. Educate them about stigma surrounding mental illness and your concerns. If they have run promotional stories about a “Haunted Asylum”-type attraction, ask them to also run a story about the protest. Make the protest both a "news event" and a "teaching moment." Offer local individual or family members who have been affected by mental illness for personal interviews.  
  • Local civic organizations, high school clubs or similar community groups may be the sponsor of an offensive attraction. Keep in mind that they often have no awareness of stigma and did not intend to offend. They usually have a strong desire to resolve controversy. Be neighborly in finding solutions.
  • Be prepared for backlash. Many people in the community may say “It’s only Halloween” or even something nasty. Take the high road. Stay polite and respectful in the public dialogue. Even if it seems that too many people disagree with your position, you win simply by raising awareness.

Do You Agree?

Do you share concerns over Halloween stigma? Do you have other strategies to recommend?  Share your thoughts below.

Tuesday, October 15, 2013

The Latino Paradox: Mental Health Appears to Not Be an Exception

By Lynda Cort├ęs-Avellaneda, Program Manager, NAMI Multicultural Action Center

Years ago, in a college class, I learned that socioeconomic status was commonly used as a predictor of health outcomes in most countries. I remember this well because my professor chose to exemplify global cases with extreme pictures of poverty and ghastly pathologies. What my sensationalist instructor forgot back then was to address how international migration would affect the locally observed epidemiologic correlation.

Today, with a growing population of Latinos in America, a paradox continues to gain statistical force based on mortality data. Upon arrival, struggling low-income Latino immigrants are generally healthier than most segments of the U.S. population.

The story appears to change within years. Length of residence in the U.S., as research suggests, may be associated with health deterioration.

Even though this phenomenon hasn’t been deciphered completely and the diversity of the Latino community complicates the equation, we are beginning to understand that the prevalence and manifestation of mental illness particularly differ between Latino immigrants and those born in the United States. Recent comparison studies have shown that:

Birthplace and cultural variance have a significant correlation with subsequent risk for many psychiatric disorders. For most Latino immigrants without a history of trauma in their homeland, foreign nativity appears to initially serve a protective role against mental illness, even with the stress and poverty often associated with immigration.

What May Account for the Latino Paradox?

As I dig for possible explanations, more questions emerge:

  • The American experience is highly determined by the constraints of economic success. As an immigrant, coping with the acculturation process and being disconnected from a familiar network, keeping up with one or two jobs and maintaining meaningful relationships commonly represent a continuous challenge. Would the chronic stress of balancing all of these aspects partially explain overall health deterioration?
  • Almost inevitably, as Latino immigrants assimilate and adjust to their new environment, we adopt new behaviors. Research has demonstrated that we tend to consume more high-calorie foods, alcohol and tobacco products. We live more sedentary lives. Are accumulated unhealthy choices to blame for decline in health overall?
  • The strains of immigration are not restricted to the migrant parents; they permeate the lives of the entire family. Conversely, Latino-American children exhibit health behaviors typical of Americans in their socioeconomic group, which generally tend to have higher rates of smoking and drinking. Children also struggle finding an identity while battling prejudice and discrimination, sometimes in the context of illegal immigration.
  • The paradox may also have to do with institutional differences. Personally, coming from Colombia, with a different system of public health services and networks of support, I wonder about the role of culture in the spectrum of mental health diagnoses and treatments. Considering the lack of access to mental health services in the U.S. due to financial and linguistic barriers—and alternative help-seeking behaviors from extended families among Latinos—can the relative “strength” of Latino immigrants be a reflection of under–reporting and under-diagnosis, rather than truly lower prevalence?

There is Hope

As previously noted, the reasons behind the Latino health paradox may be tied to an array of different factors. And even though mortality rates support the notion of health advantages, they should not lead to hasty conclusions regarding the state and health outcomes of the subgroups that make up the Latino community.

Latinos, without a doubt, are at risk for psychiatric disorders. We cannot be ignored in mental health research and the development of treatment interventions; services need to be offered that fit our individual needs. NAMI advocates for access to services, treatment, support and research, and is fully committed to raising mental health awareness and building a community for hope for all those in need.

Help NAMI speak out on behalf of all individuals and families affected by mental illness.

Tuesday, October 8, 2013

Making it OK to Talk About Mental Illness

By Matt Burdick and Dara Larson, NAMI Minnesota

This summer when we heard President Obama calling for a “national conversation on mental health” to get people talking about mental illnesses in a positive and productive way, we knew exactly what he meant. In Minnesota, plans were already under way for a very similar project with the “Make It OK” campaign. We enthusiastically took up the President’s charge—but with our own spin on things.

In partnership with our affiliates, community mental health providers, and the Make-it-OK Campaign, we will be hosting 19 community forums around the state. The President’s call to action built up the expectation and the excitement. With the National Dialogue building all around us, we are building on the “Make It OK” campaign whose mission is to get people to stop the silence, share stories, and dispel the myths surrounding mental illnesses. The more we talk, the more we understand, and the more we make it OK.

Each upcoming Community Conversation event will feature a speaker sharing their personal story of living with a mental illness and recovery (including a number of NAMI In Our Own Voice presenters), followed by a group discussion about how people can work together to make their community a more welcoming and supportive environment for children and adults living with mental illnesses and their families. The personal stories will provide an opportunity for people in the community to know they are not alone in living with a mental illness while also reducing stigma. We are asking people to fill out pledge cards that include three steps to “Make It OK” which include to learn more, start talking and to pass it on to other people by encouraging them to join the conversation. Our goal is to give people in every corner of our state the chance to have this important conversation in their community. While it may seem a daunting task, the responsiveness to the National Dialogue means there has never been a better time to spread the message of support and hope, and we are very excited to seize this opportunity.

The inspiration felt in our state office has taken hold of our community affiliates as well. Grand Rapids, in rural Northern Minnesota, had more than 50 people attend their event on a Thursday night. There was a wide variety of community members including the sheriff, peer specialists, family members, hospital board staff, people living with mental illnesses and many more. They discussed barriers and needed services in their community. Some of the barriers were lack of crisis beds and step-down services, not enough involvement by primary care providers and lack of understanding and education about mental illnesses overall. They identified a need for increased funds for early treatment, more training for law enforcement, treatment for dual disorders such as chemical dependency and increased awareness of children and teens. They even scheduled a follow up meeting to work on next steps.  

These meetings are a compelling first step to creating a dialogue around mental illnesses and creating a movement for change. People can take an easy step by pledging to talk or an even bolder step to committing to creating change. Together, we can break down the stigma surrounding mental illness.

Monday, October 7, 2013

Veterans, NAMI, a Summit and Pizza

By Jose Soto, III, NAMI Lane County Director and Tanya J. Peterson, M.S., N.C.C.

It started with pizza. Well, it actually started about a year before the first slice of pizza was eaten, but it was the pizza that was the true catalyst to forging a support network for and strong relationship with veterans.

As anyone involved with NAMI knows quite well, there is a fierce stigma associated with mental illness. I’ve found that this stigma is deep-seated in the veteran community. It can be hard for veterans to admit to having a mental illness such as posttraumatic stress disorder (PTSD). Further, many veterans shy away from NAMI because the acronym stands for National Alliance on Mental Illness. The term mental illness is hard to own for many.

Tragically, this stigma frequently prevents veterans from seeking the support and help they deserve. As NAMI, with its peer– and family–oriented support and educational programs, is a great resource for veterans, I have worked for the past year—and more—to link the two together. The process has not been easy, but positive connections are forming.

I was very encouraged this summer when President Obama called for Veterans Affairs (VA) Healthcare Systems across the country to hold mental health summits. Then, when Michael Fitzpatrick, executive director of NAMI, asked all NAMI directors to immediately connect with their local VAs, I was thrilled. This was truly a wonderful to continue the connection we at NAMI Lane County were building with our local veterans.

Eager to participate in a VA mental health summit, I reached out to the two VAs in Oregon: VA Portland and VA Roseburg. The Portland VA was already working with NAMI directors from the Portland area; however, Roseburg’s Douglas County is adjacent to Lane. The proximity and common goals of VA Roseburg and NAMI Lane made a perfect connection. On Aug. 20, 2013, I traveled 75 miles south of my NAMI Lane County office with Moy MacGill, a local veteran also interested in improving mental health access for veterans. Together, we attended the mental health summit whose purpose it was “to explore opportunities within VA and community partnerships to build and sustain efforts that will enhance mental health and well-being for veterans and their families.”

In the arena of mental health care, great things are happening for our veterans. Many different people collaborated at the summit. We joined representatives from homeless shelters and housing programs, doctors and nurses, crisis team members and others—from multiple counties in Oregon—and together we collaborated to see what our communities of veterans and civilians could do to increase the availability of and participation in mental health services.

I feel very strongly about the power of community collaboration and partnerships and I am optimistic about the collaborations that were created or strengthened by the end of the summit. I discussed the needs of veterans and their family members, presented on community collaboration and partnerships and provided numerous NAMI brochures that highlight various NAMI programs, including NAMI Peer-to-Peer, NAMI Family-to-Family, NAMI Connection and NAMI FaithNet. Out of this consortium came another exciting connection. NAMI Lane County’s relationship with NAMI Douglas County was strengthened and I was able to help members of NAMI Douglas connect with members of the VA. Even before the end of the conference, NAMI Douglas and VA Roseburg were forming plans to forge a strong, Veteran-centered mental health community.

For me, the most important part of the mental health summit was networking. Talking about the importance of community partnerships and actively collaborating to plan for the immediate future means that veterans can look forward to high-quality mental health services that carry fewer stigmas and thus allow greater access.

Post-summit, we at NAMI Lane County continue to work actively to serve veterans. When we first began to actively reach out to local veterans, we had minimal success. Again, most veterans have a strong aversion to the term mental illness. So I decided to back off a bit, but I didn’t back away. I decided to try hosting a pizza night for veterans. We made it very low-key. NAMI resource brochures were available, but they weren’t forced upon people. Fellow NAMI members and I talked causally with those who came.

The next month, we tried it again. Many returned for another relaxed night of making connections, and several brought others with them. Over the past year, our monthly Veterans’ Pizza Feed has grown. In addition to NAMI representatives, other community advocates for veterans and their families come together for casual conversation and pizza. People mingle. Resources are readily available, but they are not pushed. As a result, veterans feel comfortable and connected. Attendance has grown from approximately 12 to15 veterans per month to more than 50 per month. We have found a way to connect with veterans in a way that works for them and we plan to keep the momentum going.

NAMI may stand for National Alliance on Mental Illness, but the acronym itself is not what is important. When I am asked what NAMI is, I say that we are an organization that provides support, education and outreach to individuals and families affected by mental health issues. This helps take away stigma’s power and I have learned that the change makes people want to converse. When I describe NAMI in this way to a veteran, there is a good chance he or she will want to learn more as we share pizza.

Jose Soto, III is the director of NAMI Lane County headquartered in Eugene, Ore. He has served in the U.S. military as a member of the Army National Guard.

Tanya J. Peterson is a NAMI member and active volunteer. She writes and speaks to increase awareness of mental illness. Her latest novel, Leave of Absence, is about schizophrenia, depression and PTSD.

Wednesday, October 2, 2013

What Does the Federal Government Shutdown Mean for Social Security?

By Bob Carolla, NAMI Director of Media Relations

Due to the shutdown of the federal government that began Oct. 1, many people are concerned about the impact on Social Security benefits and other functions, until the crisis is resolved.

The Social Security Administration (SSA) has provided official notice that Social Security, Social Security Disability Income (SSDI) and Supplemental Security Income (SSI) payments to beneficiaries will continue with no change in payment dates.

See also: Informacion sobre el cese de servicios

Social Security field offices remain open with limited services, but Social Security card centers are closed. Hearing offices remain open to conduct hearings before Administrative Law Judges.

Field offices will be able to provide only the following services. Online services also will remain available (see online list below):

  • Help you apply for benefits.
  • Assist you in requesting an appeal.
  • Change your address or direct deposit information.
  • Accept reports of death.
  • Verify or change your citizenship status.
  • Replace a lost or missing Social Security payment.
  • Issue a critical payment.
  • Change a representative payee.
  • Process a change in your living arrangement or income (SSI recipients only).

The SSA will not be able to provide the following services during the shutdown:

  • Issue new or replacement Social Security cards.
  • Replace your Medicare card.
  • Issue a proof of income letter or Benefit Verifications.
  • Requests from third parties for queries.
  • Social Security Number Verifications.
  • Public Relations and training.
  • Representative Payee Accountings.
  • If your visit involves any Social Security-related service not listed above, no assistance will be available.

Online services will remain open:

The NRA’s Rhetoric is No Commitment to Mental Health Care

Photo: William B. Plowman/NBC/NBC NewsWire/Handout
via Reuters

By Michael J. Fitzpatrick, NAMI Executive Director

During much of the debate that has flowed from the Newtown tragedy last year and most recently the Washington Navy Yard shootings, we have called for a stronger mental health care system.

NAMI also has never hesitated to speak out against the prejudice and discrimination that traditionally exists against people living with mental illness. In discussing violent tragedies and debating gun control, stigma runs high. Millions of Americans have a diagnosable mental illness . They are unfairly stigmatized after mass shootings.

That’s why the rhetoric of the National Rifle Association (NRA) hit an all-time low recently when its Executive Vice-President Wayne LaPierre, on the Sept. 22 broadcast of Meet the Press, declared: “If we leave these homicidal maniacs on the streets…they’re going to kill.” He equated individuals living with mental illness with “violent criminals and the evil-minded.”

Excess and extremism doesn’t help in building consensus for constructive action; it only divides and distracts attention from achieving real solutions. In an exchange published in USA Today, the newspaper's editorial board correctly noted that LaPierre simplistic rhetoric for committing people with mental illness “would prove wildly infeasible, legally impossible and hopelessly expensive.” That’s not to say that there aren’t improvements that can be made to the mental health care system—but none were mentioned in LaPierre's alternative view published in the same issue.

Although there is no evidence that he really understands what his opinion means, LaPierre’s view that the mental health care system is in “breakdown” is correct. Millions of Americans living with serious mental illness receive no treatment at all. Chronic funding reductions, a system that waits until people are in acute crisis before helping, barriers created by misguided interpretations of privacy laws and other factors have contributed significantly to suicides, homelessness and incarceration in jails and prisons instead of treatment.

Much worse than the stigma is the hypocrisy of the NRA’s position. If the association truly supported wanting to improve the mental health care system, it would be devoting resources and lobbying energies at the federal and state levels to help create a mental health care system that intervenes early and gets treatment and support to those in need, when they need it.

Is the NRA doing anything to protect Medicaid, advocate for acute inpatient beds, more assertive community treatment (ACT) teams, or more supportive housing programs for people living with mental illness? No, when it comes to the critical policy decisions that would truly improve the mental health system, the NRA is nowhere to be seen. Talk is cheap. Stigmatizing, prejudicial statements designed to deflect attention away from the gun debate are vile.

The Sacramento Bee recently published a story claiming that an “odd alliance” of pro-gun lobbyists and mental health advocates have found “a common purpose undermining efforts to keep guns out of the hands of people who should not have them.” Nothing could be farther from the truth. There is no such alliance.

Until our nation builds and funds an accessible mental health system that provides effective and timely treatment, the tragic consequences of untreated mental illness will not be reduced.