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What is Advocacy?

12 Thursday Apr 2018

Posted by A Journey With You in mental illness, schizophrenia, stigma, Uncategorized

≈ 10 Comments

Tags

advocacy, brain health, brain illness, disability, homelessness, identity, language, mental health, mental illness, mentally ill, prison, schizophrenia], streets, Treatment

Almost everyone I have come into contact with that has access to the internet and has a mental illness (with current research, I am not sure how much longer that label will be around) calls themselves an advocate. I frequently call myself an advocate as well but will do so less and less.

Calling yourself an advocate makes it appear to people, not that you have the experience of one person, but that you are an expert or authority on one of those illnesses. Most of the advocates that I have met don’t even bother to keep up with laws, trends, research, etc. that have to do with the illness where they are viewed or seen as an expert or authority.

I will give you an example of advocacy that I think harms the larger community of people living with a brain illness. The disability community has long preferred people first language to refer to people with an illness so, a person would say, I have diabetes, not, I am diabetic, or I have cancer, not I am cancer, or I have schizophrenia, not, I am schizophrenic. Using this word may seem like a small issue to someone who is an “advocate,” and they may decide they don’t care about that issue at all and scream from every platform they can find, “I am schizophrenic! I am schizophrenic! I am schizophrenic!”

It is great that they don’t think this is a big deal. But view it like vaccinations. Many of us don’t get vaccinations to prevent ourselves from getting an illness we get vaccinations to prevent giving the illness to someone who is far more vulnerable than us. It is the cost, the dues, the responsibility of living in a community. We take care of the most vulnerable among us.

I will say that for many people being called a schizophrenic is harmful. People who call other people that are making that the key source of their identity, not allowing them to first be, writer, teacher, fireman, lawyer, wife, husband, son, father, mother, sister, brother, etc. We all have so many identities that we would prefer to be known for rather than the one that is seen as broken, or ill.

I think it is a matter of privilege that people can say the word schizophrenic doesn’t bother them. It means that being dehumanized and identified as an illness has no bearing on their lives and their happiness and their success. I challenge the people who think this way. I think “advocates” who think this way are unwilling to admit that there is a huge divide in the mental health community.

There are those with the privilege of having clear enough thoughts and the means to write on the internet every day, and there are those, living in the streets, in prison, those at risk of being shot by police, and those without access to treatment. Those people can’t afford to be demeaned anymore than they already are. Seeing them as a brother, mother, father, sister, is critical to their survival and seeing them as someone who is schizophrenic is harmful because let’s face it, people still believe people with schizophrenia are less than, not quite human, and in some cases capable of monstrosities.

In my world, until all the mentally ill are cared for, and treated with dignity, then none of us are free to claim that some issues that demean others are of no harm. It is our responsibility to stand up, and if we are going to call ourselves advocates, let’s get to it – people are dying.

40 Years Of Wandering Leads The Way Home

11 Thursday Feb 2016

Posted by A Journey With You in bipolar, hope, mental illness, schizophrenia, stigma, Uncategorized, writing

≈ 10 Comments

Tags

christianity, church, home, homeless, hope, inspiration, mental illness, mentally ill, neighbor, prison, schizophrenia], stigma, Treatment, writer, writing

When I say, “It’s the little things that make up a life and that matter the most,” I mean it.

Sunday I went to church with my husband. As soon as I walked in the door, a member reached out her arms and gave me a hug. The pastor was next, and he did the same thing, and he whispered in my ear, “There’s my favorite author.”

To the pastor and the member of our church these welcoming greetings were probably routine, but to me they were life changing.

I haven’t felt at home in the church since I was ten years old. I never thought I would find a church where people open their arms to me. I never thought I would find a church that didn’t turn the “less desirable” people away. In my mind, I never thought I would find a church where people acted like Christians and welcomed everyone to the table.

I have seen mentally ill people removed from services.

I have heard pastors make jokes about the mentally ill.

I have felt like an outsider for forty years.

If you Google “mentally ill neighbor” you will find that people don’t want us to live next door to them.

If you Google “prisons and the mentally ill” you will find that the largest treatment facilities in the country for the mentally ill are jail cells.

If you Google “homelessness and the mentally ill” you will discover that a large portion of people living on our streets are mentally ill.

People seem to want us to disappear. It would be easier if we didn’t exist because we can make other people uncomfortable when our symptoms are too hard to manage – we may be unable to keep up with our hygiene, or we may talk to voices others can’t see.

I know that people who have the same diagnosis as I have are treated as the unwanted, the throwaways, or the eye-sores.

Do you know what it is like to go through life belonging to a group of people who have to prove their humanity? Proving our humanity entails taking a shower, washing our clothes, finding housing and no longer talking to voices inside our heads– all things that may be impossible for us to achieve.

I went to God’s table on Sunday morning, and the people there smiled at me, opened their arms and welcomed me. After forty years of closed doors, I have entered the inner room and found my way home.

Facebook Statuses I Would Like To See In 2030

27 Wednesday Jan 2016

Posted by A Journey With You in bipolar, hope, mental illness, schizophrenia, stigma, Uncategorized, writing

≈ 21 Comments

Tags

bipolar, change, cure, depression, drugs, elderly, Facebook, future, guns, homeless, hope, hospitals, inspiration, Internet, medication, mental illness, mentally ill, police, prison, schizophrenia], social media, writer, writing

Facebook status updates I want to see in 2030:

“The state psychiatric facilities are being turned into retirement centers for the elderly. Of course, they’ll add golf, swimming pools, and restaurants.”

“The United States no longer has the highest number of people in prison. Since a cure has been found for so many mental illnesses, the number of inmates has dropped to less than half of previous numbers.”

“Back in 2016, there were thousands of homeless people in the United States. Now all we see are people backpacking around from city to city – travelers have replaced the homeless.”

“Can you imagine what it was like in 2016 when people could buy weapons on the Internet? It must have been terrifying!”

“Can you believe there was a time when some people couldn’t afford their medical treatment? Barbaric!”

“My grandparents had to choose between groceries and medication! How could anyone allow that? Terrible!”

“My parents said when they were younger, that some people didn’t vote! Can you imagine that?”

“It is so nice to see our military rebuilding all our roads and bridges.”

“My mom said the police used to respond to calls regarding the mentally ill. Say what?”

“I heard people used to make fun of mental illness. Wow! Seriously, messed up.”

“There were hate groups in 2016. Damn, I’m glad I live in 2030!”

“Previous generations nearly destroyed our planet. It is a good thing the world came together and made some changes.”

“I read a book today about life in 2016. Man, have we come a long way!”

“I got my shot today. I no longer have schizophrenia.”

 

Equality And Justice For All

28 Monday Dec 2015

Posted by A Journey With You in bipolar, mental illness, schizophrenia, stigma, Uncategorized

≈ 10 Comments

Tags

Advocate, christian, disability, doctors, equality, feminism, intersection, justice, LGBT, LGBTQ, mental health, mental illness, mentally ill, prison, racism, rights, schizophrenia], suicide, women, writer, writing

Yesterday my husband and I watched Netflix all day because my back was hurting and the two of us came down with a cold. We watched an old movie, “Regarding Henry,” and we watched a documentary from 2007 called, “For the Bible Tells Me So.”

“Regarding Henry” is about an attorney, who isn’t a nice guy. He gets shot and has to learn everything all over again. It is about his transformation. It is a feel good movie.

“For the Bible Tells Me So” is a documentary about how many people in the church have treated their gay children and the things that many pastors and famous preachers have preached about being gay. It only got three stars on Netflix (probably because of a poorly done cartoon that explains studies scientists have done to find the cause of homosexuality, and it lists all the medical associations that no longer consider it a disorder). Besides the strange cartoon plopped in the middle of the documentary my husband and I both think it is worth watching.

Many people writing about mental illness call themselves advocates, and I want to suggest that if we are going to be effective advocates, we need to advocate for equality and inclusion for all people. I didn’t know this, but LGBTQ teens had a much higher rate of suicidal ideation and attempted suicide than the general population.

Suicide is a problem that should be on the radar of any mental health advocate. The other things that should be on our radar are the number of people of color locked in prisons and who suffer from a mental illness. Women should be on our radar too because it is a fact that doctors often dismiss their complaints or treat their pain in a much less aggressive manner than they do that of men. Also, the percentage of mentally ill women in prison is higher than that of men. 

I have known for a long time that there is an intersection between disability issues, feminism, racism, and LGBTQ issues. As someone who cares passionately about the issues regarding the mentally ill, and how we are perceived, treated, talked about, housed, etc. There is no way to move away from these other issues.

To be an educated advocate for the mentally ill and to understand all of the issues and how they intersect, collide, and combine with other issues, we need to start reading about feminism, racism, LGBTQ. The problems inherent in these movements are also our problems, not just because equality and justice are something we are fighting for, and we should help others to achieve – these issues have an impact on the mental health of Americans as a whole. The way I see it is that we must move forward hand in hand because if we leave one group behind that group will keep the rest of us from truly flourishing. Many of us are in this together.

Letter to Future Americans

23 Friday Oct 2015

Posted by A Journey With You in hope, mental illness, schizophrenia, stigma, writing

≈ 7 Comments

Tags

americans, bipolar, depression, essays, homeless, hope, inspiration, letter writing, mental health, mental illness, mentally ill, prison, schizophrenia, writing

I hope you will jump over to Psych Central and read what I think is my best post there so far, Letter to Future Americans.

How Far Have We Come, Inches Or Miles?

16 Friday Oct 2015

Posted by A Journey With You in bipolar, mental illness, schizophrenia, stigma

≈ 16 Comments

Tags

acitivist, advocacy, Advocate, bipolar, compassion, dehumanizing, depression, essays, Germany, history, human, insurance, jail, law, mental health, mental illness, mentally ill, Nazi, past, police, prison, psychotic, racism, statistics, sterilization, United States, writing

“Nazi Germany was not the first or only country to sterilize people considered “abnormal.” Before Hitler, the United States led the world in forced sterilizations. Between 1907 and 1939, more than 30,000 people in twenty-nine states were sterilized, many of them unknowingly or against their will, while they were incarcerated in prisons or institutions for the mentally ill. “ (A link to quote source).

If you think that stigma doesn’t exist, and that mentally ill people and their advocates need to lighten up then please read the quote again.

“…the United States led the world in forced sterilizations.”

If you are thinking to yourself, ‘Well, that was in the past, that could never happen today.”

Liberal leaning California led the pack in sterilizations. The last one performed under the law was in 1963. So, until just over fifty years ago, sterilizing people with a mental illness was legal.

Consider the case of the woman identified as Mary Moe in 2012. Mary had been hospitalized several times for schizophrenia and when she turned up at an emergency room pregnant a judge ruled that she be forced to undergo an abortion and then sterilization. Fortunately, another judge stepped in and made a different decision. But this was only three short years ago.

I am constantly horrified by the treatment of the mentally ill, and I am using sterilization as just one part of how the mentally ill have been and still are treated in this country.  The United States has a very grim report card when it comes to caring for the mentally ill – asylums, lobotomies, electric shock, insulin shock, ice baths, jails, the streets, no treatment, etc.

Obviously sterilization is not a big problem to fight off today. There are still some people who probably believe that all people with a mental illness should be sterilized, but thankfully not too many of them are in a position to make this standard procedure or the law.

But the situations that lead to people implementing laws like sterilization are still present. In order for people to accept the sterilization of others, dehumanization has to take place. The terrible treatment of the mentally ill in this country is as old as racism. And just like racism, its roots are thick and deep and insipid – they don’t let go, or change easily. Many people see the mentally ill as “less than” and don’t care that they are left without treatment in the streets and in prisons, because after all, the mentally ill are not viewed as “fully human” and deserving of compassionate care. The statistics regarding the treatment of the mentally ill prove that dehumanization is still persistent in our culture.

It’s frightening to be mentally ill in America in 2015 – one psychotic episode which involves the police could result in your death, one psychotic episode where you are terrified and confused, could lead to jail time. The loss of income could mean the loss of insurance and treatment. Most of us realize we are only a few steps away from those people who make up the frightening statistics. And the fact that we have to hold on so tight to the way things are or we could watch our lives spiral out of control is dehumanizing – a lack of a safety or security.

Self Centered and Angry

25 Tuesday Aug 2015

Posted by A Journey With You in bipolar, mental illness, schizophrenia, writing

≈ 30 Comments

Tags

acitivist, advocacy, Advocate, bipolar, Blogging, community, culture, homeless, institutions, involuntary treatment, mental health, mental illness, mentally ill, prison, psych wards, psychology, schizophrenia, streets, writers, writing

The mental health community is actually quite small. I see the same names turn up over and over again on various mental health websites. In my estimation there are less than one hundred popular authors and bloggers who seem to be all over the place. Then there are ten thousand or more people who follow these popular writers and each other.

I like to read what other people who have been diagnosed with a mental illness are saying. And I noticed a few things; many of the authors and bloggers are much younger than me – some are in their twenties and many are in their early thirties. I will be fifty next month.

I believe all of these writers have important things to say and that each one can contribute to the conversation about mental illness in a beneficial way. I have noticed a difference between most of them and me though, and that is many of them are far more negative and angry than I am. They also tend to focus the details of their writing solely on themselves and not look at the bigger picture of institutions, prisons, community care, involuntary treatments, etc.

I don’t know why these younger representatives for mental illness seem so angry. I’m not angry that I have paranoid schizophrenia. I don’t want anyone to feel sorry for me, or to look at my life stories, and say, “You are amazing.” I’m not amazing. I am living the best life I can live with a mental illness, and I believe most people with a mental illness are striving to do the same thing. What good does it do to complain, to look for sympathy, to be angry (unless that anger pushes you to act by writing letters, calling senators, and representatives, corporations and anyone else who has the power to change the treatment of the mentally ill)?

I think a certain amount of acceptance, grace and gratefulness comes when you have lived with a mental illness for over two decades, and survived. By the time you are fifty you realize that terrible things can happen to you – psychosis, living in the street, living in a state hospital, losing everything, going to prison, being denied treatment.  If those things are not currently happening to you, then you can feel grateful in a way that is both heartbreaking and a huge relief. When I think of mental illness, I think of how much worse my situation could be, and how I want to change the worst conditions for the people who are experiencing them.

I’ve noticed these younger writers have an edge to them – they have no problem using slang and swear words, and they are frequently dissatisfied with one thing or another. I have read many excellent writers among this group, and I know they have the potential to contribute thousands of articles and essays over the life of their careers. I can only hope they will look deep inside and see their ties to the less fortunate and turn their personal anger into anger for the benefit of others.

There are times when I feel I have more in common with people in the streets shouting at voices only they can hear than people sitting behind a computer typing how tough it is at the doctor’s office, at the hospital, or at the grocery store. If you ever get the feeling I am trying to convince you that my life is “just too hard.” Please tell me to take a walk downtown and see the people sleeping on the streets or to open a newspaper and read the headlines.

I’m not amazing. I’m lucky, and at fifty, I want to use that luck to change the world for others who have never had luck or had luck and lost it.

I can’t hold thanksgiving and anger in my heart at the same time.

Slender Man and Schizophrenia

11 Tuesday Aug 2015

Posted by A Journey With You in mental illness, schizophrenia

≈ 10 Comments

Tags

acitivist, advocacy, Advocate, children, crime, jail, legal justice, mental health, mental illness, mentally ill, murder, prison, psychiatry, psychology, schizophrenia, slender man, Treatment

In any crime the victim should receive the first consideration, in my opinion. With that in mind, the first thing to say about this case and this situation is that I am glad that Payton Leutner survived, and I hope she receives all the psychological help she needs in order to live a happy and productive life.

The two girls who committed the crime, Morgan Geyser and Anissa Weier, are being called the “Slender Man Girls” because they planned to kill their friend, Payton Leutner, for months in order to please the modern day boogey man, Slender Man.

Yesterday a judge ruled that the Geyser and Weier would be tried as adults. The girls were twelve years old when they stabbed their friend nineteen times and left her to die. I know that is gruesome, but the fact remains that after a year in lock up, they are only thirteen right now.

The worst part of this for me is that a doctor has said the Geyser has schizophrenia and she has gone untreated while in custody.  According to the doctor who diagnosed her, her delusions are getting worse. She still believes in Slender Man, and she believes she is friends with characters from Harry Potter.

All the studies suggest that early treatment of schizophrenia is important for successful treatment and for recovery rate. A person should be treated as soon as possible after their first episode of psychosis.

Not only is there a possibility that a mentally ill girl will be tried as an adult, she has been denied treatment for a year while she is in custody which could mean that once she does receive treatment, she will never fully recover, or may not respond well to meds.

I believe it is cruel and unusual punishment to deny treatment to someone who is delusional and has been diagnosed with schizophrenia.  I also believe her life has been completely changed and damaged by the crime she committed already and to keep her from treatment and possibly condemn her to a life of delusions, fantasies, and other symptoms of schizophrenia by delaying her treatment is outrageous. It is barbaric.  She is thirteen.  I don’t know about you, but I didn’t understand all the consequences of my behavior at thirteen.

I care about the victim first and foremost, but we have two other children to think about, and one of them has untreated schizophrenia.

Is this rehabilitation? Is this justice? Is this ethical? Is it humane?

You decide.

The Treatment of the Mentally Ill

22 Wednesday Jul 2015

Posted by A Journey With You in bipolar, mental illness, schizophrenia

≈ 14 Comments

Tags

acitivist, advocacy, Advocate, bipolar, depression, homelessness, human rights, inspiration, jail, medication, mental health, mental illness, mentally ill, prison, psychiatry, psychology, schizophrenia, Treatment

It is true. I have two strikes against me, I am a woman and I have schizophrenia. I am also a member of the middle class, a white person, and I have access to the best medical treatment. It is no longer enough to write about the inhumane treatment of the vast majority of people with mental illnesses in this country. Who am I to talk about what it is like to live in a state of psychosis on the streets? Who am I to write about the fact that prisons have replaced mental hospitals in this country? I write from a place of privilege.  My experience of schizophrenia is tame compared to the majority of sufferers. I can empathize with their pain, and I can understand their symptoms, but I can’t imagine the horror of being locked up, or trying to find food and shelter when voices are raging in my head.

I need to do more. I commit to doing more.

I am not these people, yet I am. It could easily be me. If something happened to my husband, my life could change in an instant. I won’t be silent. I can’t be silent. To know this information and to do nothing is to condone the current treatment of one of the most vulnerable segments of our society. You can’t say you have compassion and turn away. I can’t. My journey as a true advocate starts today.

America has a dark history when it comes to the treatment and care of the mentally ill. Prior to the 1840’s and the work of Dorothea Dix, the mentally ill were housed with criminals. They were often kept without heat, in darkness, chained and beaten. Dix fought for institutions to treat and house the mentally ill. She was successful in her efforts. But over time, there ended up being abuses in those institutions as well. People were committed with no hope of ever being released. The conditions were terrible. People were subjected to inhumane medical practices and experiments (lobotomies, electric shock, insulin therapy, ice baths, etc.) Over the last thirty years most institutions have been shut down and abandoned.

The current policies and civil rights protections we have were meant to keep people with a mental illness from spending their life in an institution without any hope of release. Currently, a person can’t be committed involuntarily unless they are a danger to themselves or others. And a person can refuse treatment (medications).

We know the result of closing all those institutions it has resulted in a drastic increase in the mentally ill living on the streets and in prisons. This is another dark time in American history for the mentally ill.  It is inhumane to have some of the most vulnerable people among us having to somehow figure out how to survive without a home, or to have them kept in solitary confinement twenty three hours a day.  It is known that solitary confinement can cause psychological distress including psychosis, hallucinations, depression, etc.  This is an issue of a human rights violation and it is happening in your neighborhood, in your cities, in your country, in the United States.

It is estimated that 4.1% of U.S. adults have schizophrenia, bipolar disorder or severe depression. But it is estimated that 36.6% of prisoners and a higher number of those in jail, have one of these illnesses. 

There was a study conducted that showed that people in other countries have a better rate of recovery from schizophrenia than in the western world and much of this has to do with the support and attitude of the family.

I find it as no surprise that some cultures produce better outcomes with severe mental illness than the United States. Our history with the treatment of the mentally ill is a grim one. I don’t know how we can call ourselves a compassionate nation.

I am going to write my representatives about better treatment for the mentally ill (again). Maybe, the thought that I can change the world is a delusion brought about by my schizophrenia. I don’t know, but it is a pleasant symptom, and I like myself better for having it. I wish more people suffered from delusions that caused them to take steps to make the world a better place, because guess what? If we all took action, it would no longer be a delusion, it would be reality.

But for now, reality sucks.

What the Victims of Racism and the Mentally Ill have in Common

14 Tuesday Jul 2015

Posted by A Journey With You in bipolar, mental illness, schizophrenia, stigma

≈ 14 Comments

Tags

acitivist, advocacy, Advocate, bipolar, creative nonfiction, derogatory words, mental health, mental illness, mentally ill, prison, psychiatry, psychology, psychosis, racism, schizophrenia, stereotypes, stigma

Nine people are dead in South Carolina. The cause of their deaths was racism. Racism is a national problem, but we only seem to discuss it when there is a crisis. The same is true of mental illness. Mental illness is a national problem that is only discussed when there is a crisis.

This current crisis (act of terrorism) was a cross section where both of these national problems collided. There was talk of white supremacy, hatred, racism, and at the same time, the media was quick to speculate that there was a possibility that the shooter (do we need to name him?) was mentally ill. Because of course, every time there is a mass shooting, we claim the shooter is mentally ill.

I can’t truly understand what it feels like to experience racism, because I am not a person of color. I am white, but in certain circumstances, like at the hospital, pharmacy, clinic, or when I am actively psychotic, people don’t see my whiteness, they see my schizophrenia. And people with schizophrenia do understand a lot about what it is like to be a part of a marginalized population.

We understand what it is like to be referred to in a derogatory manner. We don’t have the N word, but we have the words, crazy, psycho, lunatic, nut-job, wacko, cray cray, etc. We know what it is like to turn on social media and be met with hatred, ignorance, and a constant barrage of jokes. I see memes posted on Facebook and Twitter that are joke about hearing voices. The same people posting those jokes and memes consider me a friend. I guess those people aren’t hostile towards the mentally ill though, because after all, they do have one mentally ill friend.

Prison is something else those of us with a mental illness share with black Americans. According to the CDC in 2013 the percentage of black Americans was 15.2%.  According to the Federal Bureau of Prisons 37.6% of those in prison are black.  Those numbers seem disproportionate don’t they? A huge percentage of people who are black are in prison. This is also true for the mentally ill. According to an article in the April 7th, 2015 issue of the Atlantic it states that half of all prisoners in jails and state prisons have some form of mental illness.

Of course there is the history of this country. The mentally ill were never slaves, and no one, but the people who live it, can know what having your ancestors live as the property of others is like. I wouldn’t pretend to know the impact or magnitude of that reality. I also cannot pretend to know what it is like to live with organizations like the KKK, or the threat of being hung.  No, the experiences are not exactly the same.

The mentally ill do have a painful history in this country though. Those who came before us were sterilized, lobotomized, given ice baths, given insulin therapy, and electric shock therapy, they were contained in straightjackets, and many spent their whole lives in institutions.

There is also the issue of police killings. Since the 1980’s the incidents where the mentally ill were/are killed by police continues to increase. In the December 9, 2012 issue of the Portland Press Herald it was estimated that up to half of all fatal police shootings that year, involved a mentally ill person.

In a few weeks the news outlets will rarely mention South Carolina. We may get updates about the perpetrator and his trial. The victims will lose their air time. I hope the conversation continues though. I hope this for all of us, because a society that marginalizes people shouldn’t be setting itself up as an example for the rest of the world to follow.  Not everyone here feels all the benefits of equality.  I can think of two groups of people that have never tasted the full measure of a just and equal system.

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