NAMI Ohio Stigma Buster

February 2010

www.namiohio.org

Dagmar Celeste

Former First Lady of Ohio

Jewell Family Pic

Dagmar Celeste

Dagmar Celeste has been talking about “recovery” since the early 1980s -- long before the term became a generally accepted part of the mental health lexicon. As the First Lady of Ohio, Mrs. Celeste was a trailblazer in many other respects. She was a feminist, a human rights advocate, a deeply spiritual woman, mother of six, wife and partner of the Governor, and a woman dealing with a mental illness.

“When I was pregnant with my sixth child and first began exhibiting the signs of mental illness, my kids will tell you that they were delighted. I was telling them all kinds of wonderful stories and we were making beautiful things together. Eventually, however, when I started making calls to my husband’s office …he was Lieutenant Governor at the time…that left his staff puzzled, he packed me up and took me to the home of a friend in Cleveland .”

After a few days, Mrs. Celeste’s symptoms did not improve and she was hospitalized in Cleveland . “I was hearing voices and everything was taking on triple deep meanings. The psychiatrist was not at all helpful. He was a sexist and had preconceived ideas about me. There was no healing, and I was too much of a feminist to put up with it. It was like a bad trip,” Mrs. Celeste explained.

Fortunately, she had a husband who listened to her, “Dick asked me what I needed, and I told him I needed a female psychiatrist. He took me to Mt. Carmel in Columbus and not only was my doctor a female, but she also spoke German! It turned out that what sounded like babble to my previous doctor was actually me speaking German, my native language!”

When asked if she feared the stigma of mental illness when going public with her illness, Mrs. Celeste said, “Because I am a generally outspoken person, what is very difficult for most people to do was not difficult for me. It brought meaning to my own suffering. In fact, I thought that talking about my illness may prompt other people with mental illness to get help quicker.”

In fact, having a wife with a mental health disorder may have even helped her husband get elected. “I believe that people get elected for their weaknesses as much as for their strengths. We’re all afflicted with something; it is only a matter of degrees. When you are afflicted with an illness, it is easier to have compassion for those folks who are more afflicted. Look at Betty Ford and Roselyn Carter, two great First Ladies that took their own illnesses and created something that has positively impacted millions of lives.”

Stigma really only became a problem for me after my husband became Governor, and it didn’t come from the public or the media. It came from a few of Dick’s staffers. If they were opposed to something I suggested, they would dismiss it and say it was ‘crazy talk'."

Over the course of her illness, Mrs. Celeste learned how to manage her illness. “I have discovered over the years that when I start speeding, there are some things I can do to take care of myself. In my case, I go incommunicado for a couple of days, eat red meat, and have a beer. Obviously, I wouldn’t recommend this for everyone, but it works for me.”

It brought meaning to my own suffering. In fact, I thought that talking about my illness may prompt other people with mental illness to get help quicker.

Mrs. Celeste does not like some of the terminology that is used in the mental health system to describe her experiences. She prefers the term “speeding” to terms like “mania”. She says, “It sounds negative. In some cultures, these experiences are viewed as spiritual breakthroughs. Here we dampened them down to such a degree that people operate from fear, rather than love, and these episodes become demonic. Not all of my psychotic episodes have been negative experiences; sometimes these extreme states can allow us to experience our internal being.”

“When people with psychotic tendencies come to me for advice, I tell them, ‘you need to identify a few people whom you trust and give them permission to tell you when they see something out of the ordinary. Sometimes it is hard to hear it and even harder to act on it, but you have to be willing to turn things over to those you trust. This is a very difficult thing to do, but it can prevent you from falling into a deeper abyss’. When my kids tell me that I am not acting like myself, I don’t get defensive. I know I need to pay attention and to focus on getting back in control."

Asked if she has any advice for those who are working in today's mental health system, she offered this, “Back in the 80's, a patient's input was often discounted. Sadly, this is still the case far too often. It does not have to be this way. Doctors, clinicians and the entire treatment community have to learn to trust people to know what is best for them. We need to find a way to open our hearts to these people and allow them to be responsible for their lives and to help them turn their experiences into something positive. And when it becomes too much, we need to be there for them during these gaps.”

To learn more about Dagmar Celeste, check out her book entitled, “We Can Do Together: Impressions of a Recovering Feminist First Lady” (Kent State University Press).

Feedback: Report Presents Opportunity for Identifying System Needs

Earlier this month, the Strickland Administration circulated a draft document entitled, Balancing and Beyond: A Vision for Community Services and Supports for Individuals with Disabilities. The purpose of this document is to describe existing and future initiatives to offer people with disabilities greater choice in living arrangements and services that support independent living.

This document is in response to the 1999 United States Supreme Court decision in which the court held in Olmstead v. L.C. that the unnecessary segregation of individuals with disabilities in institutions may constitute discrimination based on disability. The court ruled that the Americans with Disabilities Act may require states to provide community-based services rather than institutional placements. In the 6-3 opinion, the court held that unjustified segregation in institutions is discrimination because: 1) it incorrectly presumes that people with disabilities are incapable or unworthy of participating in community life; and 2) confinement in an institution severely curtails everyday life activities, such as family relations, social contacts, work, educational advancement and cultural enrichment.

States are required to show their compliance by developing a plan to assure that individuals with disabilities are afforded options to live within the community. This document represents that plan. As mental health advocates, we are aware that access to housing options and supports for people with mental illness to live as independently as possible are in short supply. Since the Strickland Administration is currently accepting input on this DRAFT document, advocates have the opportunity to point this out as a part of this process.

Please take a moment to review the document and share with us any concerns or suggestions that you may have by e-mailing us at amiohio@amiohio.org. To view the draft: http://www.odh.ohio.gov/landing/jackson/olmstead.aspx .

Stigma Busting Challenge: Capture your story in writing. Record your thoughts on your own experience with mental illness so you are ready to share it when the time is right for you.