I have a new post on Psych Central. The link is here. It would be great if you would pop over there and give my other blog some love. Thanks!
Yesterday I wrote a blog post about what schizophrenia is and what it is not. This post is similar but rather than look at the personal (stories about me) I am looking at how people view severe mental illness on a national level.
This election cycle was difficult for many people to get through. The things that we had to listen to on the nightly news were vulgar, intolerant and upsetting in so many ways. We experienced Islamophobia, xenophobia, homophobia, misogyny, mocking of the disabled, and then those of us who have a mental illness experienced something else: we experienced more insults and misunderstanding than I have encountered in the twenty plus years since I received a diagnosis.
Insulting language about mental illness was everywhere I looked. It filled up my Facebook feed: lunatic, unhinged, crazy, bat shit crazy, insane. It was in mainstream newspapers and used by pundits on the nightly news. Derogatory language about mental illness had become the norm for those who normally fight for marginalized people.
Seeing so much reference in a negative way about mental illness was startling and painful enough, but the reasons why people were using that language was even more alarming. People were confusing intolerance, hate speech, aggression, bigotry, misogyny, sexual assault and all manner of other disturbing things with symptoms of mental illness. None of those things have anything to do with mental illness.
I have symptoms like, depression, anxiety, auditory hallucinations, tactile hallucinations, visual hallucinations, social anxiety, lack of motivation, and isolating socially to name a few. As you can see, none of the things I mentioned as symptoms have to do with discriminating against, disliking, or being intolerant of other people. Also, none of them have to do with aggression.
What people did, millions of people, during this election is make being a racist, sexist, etc. into the definition of mentally ill and those things are not connected. This climate of inappropriate and inaccurate cause and effect impacted me so much I am only now able to write about it. Since the election, I have only seen this addressed once in an article on a news outlet like Huffington Post (I think that is where it was but I can’t be sure).
I felt as if all the social justice people completely abandoned the mentally ill and the nation decided that whatever unfavorable characteristic someone displayed it was due to mental illness. It was as if the title mental illness had become a dumping ground for all the things people find distasteful in others. We became not the trash collectors, but the trash.
Since so few people recognized that this was happening, and did nothing to change their language, I am sure that we will see much more of this over the next four years. The progress the mental health community achieved over the past few years in educating people about mental illness may very well be eroded by the current political climate. I hope the damage is not severe. Those of us who have once again been characterized by the media and the public as “bad” people will suffer the consequences of this latest wave of ignorance and misunderstanding.
My head is spinning, and I don’t know which direction to take my thoughts. I have read much more than usual over these past two years trying to educate myself on racial issues, disability issues, LGBTQ issues and many other things that fall under identity politics. I have gone in so many directions by reading that I am at a standstill. I have been silenced for months now. I am afraid to speak up and afraid to have an opinion.
In the current political climate of increased hatred where people of color or people dressed in religious clothing fear harassment and possibly violence, I have watched actions of solidarity (like wearing a safety pin) to identify allies in public, be torn apart by people claiming it is a sign of privilege. People also claim it is too little too late, and generally a stupid idea. People have criticized the act of wearing a safety pin as something that only benefits the wearer making them feel good (like they can pat themselves on the back for not being a part of the problem).
When acts of hatred started to increase with a terrifying frequency in this country I wanted to do something to let people know, I didn’t feel the same way as the people perpetrating these acts. When I heard about the safety pin, I pinned one to my shirt the next time I went out. In a museum, a woman of color also was wearing a safety pin. We spoke about our fear, our sadness, our desire to represent something other than division and hatefulness in the world. We wanted people to know we would not sit idly by if someone decided to harass them. Of course, I didn’t think wearing a safety pin was the only thing I could do or even the only thing I should do. I made a renewed commitment to try and read more essays from marginalized voices. I immediately started calling on my senators and representatives.
Even though I had a wonderfully human moment while wearing the safety pin, I only left the house once wearing one. I read so much criticism and so many people trying to shame people who only wanted to find a concrete way to show support in public that I was afraid to act. I was afraid of offending the very people I was trying so hard to show that I am an ally.
I am not immune to hatred. I have a husband who is brown, and I have a severe mental illness (schizophrenia – the most stigmatized of the mental illnesses). Also, I have spent two years trying to educate myself on the reality of other marginalized groups. In other words, I am not the enemy. I may not always make choices that suit everyone regarding how I go about being an ally, but my heart is always in the right place which is to stay I stand beside and not in front of the oppressed. Can I use more education? Yes, I think that I will need to continue my education until I die. I will never be perfect. I will never be completely “woke” to every instance of racism, homophobia, transphobia, sexism, Islamophobia, etc.
I have read enough articles and essays to be aware that this piece of writing would probably be torn apart by some for what is called “white fragility.” White fragility is the inability of white people to accept the calling out of their privilege. Look, let’s get real here: I see the people like me filthy dirty, with torn clothes, matted hair and yelling in the street. I see the media portrayal of people like me as dangerous serial killers. I see the people like me (who account for half of all of those shot by police) killed by bullets. I see the people like me being warehoused in prisons instead of hospital or community treatment. I see the people like me dying an average of twenty years sooner than their peers. I know and live stigma and discrimination every single day. I may be white, but I am also a part of a group that is dehumanized every single day by huge numbers of people, organizations, the media, etc.
During this election cycle, I have seen derogatory mental health terms used over and over again to describe one of the candidates. I have seen hatred and bigotry ascribed to mental illness (which is so far from accurate). I have seen more use of the words, lunatic, unhinged, crazy, tinfoil hat, etc. It has been widespread and those terms repeatedly being used by many of the same critics of the safety pin and those who would shame others for not being fully “woke” on every issue.
I may always come under fire from those I want to support, but the same is not true for those who want to support me or people like me. If you want to be an ally to the mentally ill, I am going to ask you to keep reading what I and others with a mental illness write. Please keep supporting our voices in publications and on popular websites. Please try to understand us and if you can think of a way to let me know that you care about my experience and safety, I won’t shame you. I promise. I will welcome you as an ally. If you want to wear a safety pin to support people with schizophrenia, I would be thankful, and I might even buy you a cup of coffee. We could talk about the fact that my favorite breed of dog is the French bulldog and how I wasn’t a cat person until I inherited a cat from my brother’s partner who died from AIDS. You know, we could just talk and get to know each other instead of adding to this division we could add building blocks of friendship and humanity. Because that’s what it all comes down to folks – being human- it’s tough, and it’s beautiful, and we are imperfect as hell.
I try to ask my eighteen-year-old niece what it is like being a young woman studying biochemistry. She has no complaints. I try to engage her about being a woman in a traditionally male field, but she doesn’t see it that way. My niece is voting for Bernie Sanders. Most of the people I love are voting for Bernie, but I am voting for Hillary, and the reason is baseball.
At nine years old, I had three older brothers and a mother who worked full time. Our neighbors, an older couple, who lived across the street and down a few houses, treated me with kindness and went out of their way to spend time with me.
Mr. Carlson worked for the Department of Fish and Game, and he would bring me eggs from all kinds of birds. He would meticulously label them for me, much like my grandfather labeled rocks for me, and I had an impressive collection. My favorite was an ostrich egg because it was so big, but I didn’t pick it up often, afraid as I was of dropping it and having whatever was inside splatter all over the floor, and possibly, me.
Mrs. Carlson would invite me to their house and ask me to do her hair. She would allow me to put hot rollers in it and comb through the thin curls after they had “set.” While the rollers were doing their thing, I would look at Mrs. Carlson’s bell collection. She had hundreds of bells all lined up on shelves throughout her living room.
One day while I was styling Mrs. Carlson’s hair I told her my one dream was to play baseball. I wasn’t the kind of girl who dreamed of my future wedding, or going to Disneyland or being a princess. I wanted to play baseball like my older brothers even though it meant I would be the first girl in our town to play little league.
Mrs. Carlson laughed when I told her my dream was to be on a little league team. She told me that no girl who loved her would ever play baseball. It wasn’t something that girls do.
I had never given voice to my dream before that day, and I never would again. Silently and despondently I put the dream of baseball behind me.
Not too long after that, my mom got married, and we moved to another town. I would occasionally take out my baseball mitt and play catch with my new step brothers, or my biological brothers or neighborhood kids.
As I grew older, I never replaced the dream of being a baseball player. I wasn’t particularly passionate about anything.
When Hillary Clinton gets up to bat this November she is going to knock that ball out of the park and rather than be on the sidelines as a cheerleader, I am going to grab my mitt, get on the field and play whatever position I want.
That’s the way we do it now, Mrs. Carlson. Girls can finally do anything they want, baseball included.
I try to avoid talking about religion and politics on my blog because I don’t want to spark arguments, get people’s blood pressure up, or make this into a blog about issues. Normally, I write about mental health, relationships, and life in general.
I have to say something about this presidential election, though. And what I have to say has to do with all of you. Those of you living in the United States have a voice. You have a say in this election and for those of us with a mental illness, it is a critical time.
Think before you vote. That is all I am asking from anyone. Please think about what matters most to you before you cast a ballot in this election.
I will not keep it a secret from you that I am frightened by Donald Trump. He has called women names, he has threatened to put restrictions on Muslims, and he has threatened to deport millions of people. He has the support of people who are organizers and supporters of hate groups.
If none of what I have written so far bothers you, what do you think Donald Trump thinks about people who are mentally ill? I can tell you that he publicly made fun of a reporter with a disability. You can watch the video here.
If Donald Trump has no empathy for people who suffer from a chronic illness, if he went so far as to imitate in a derogatory way someone with a disability what do you think he would say about someone with schizophrenia or bipolar disorder?
Many people are claiming that there are similarities between Donald Trump and Hitler. I don’t know if that is true, but I can tell you that the first people to die in Hitler’s Germany were the mentally ill and people with other disabilities. All the tests to “perfect” his killing machine were conducted on those with a disability.
I can also tell you that all the issues that impact people of color also impact the mentally ill – the majority of police killings involve a mentally ill person, people with a mental illness are being treated more often in prison than in hospitals, and there are stereotypes and stigma involved with being mentally ill. The list goes on. It is in our best interest to care about the civil rights of all people because historically when other group’s civil rights are limited ours are limited as well.
I am frightened by the racism that the Trump campaign has brought out in this country. I am frightened for the people I love that are people of color. I am also frightened for all of us who suffer, and have been public about our mental illnesses.
I don’t know how a Trump presidency would turn out because I am not a psychic. I do know that if he believes the things he says that he lacks empathy for vast numbers of people. I will cast my vote for someone who wants to decriminalize mental illness, and get those who are suffering out of prisons and off of the streets.
I want to go forward with mental health treatment and the rights of those who are mentally ill. You can read all about our dark history. I want the lights to stay on and the sun to shine. Think about your vote. It matters. It not only matters to others, but it also matters to you, personally.
Let’s think about it.
This post is a hierarchy of mental health advocacy that I created based on my priorities, development, growth and commitment. I am not at a certain level. I find that I move back and forth through the different phases. This document is a work in progress; it is a living document that I am creating to help me grow as an advocate. Because it is a living document, and I am going to be updating it, feel free to leave comments with information I may have left out or anything that may be helpful to grow this idea.
- Advocacy usually begins with the focus on self.
Most people would agree that writing can be therapeutic. There are many blogs and online journals that people write in an attempt to work through their issues. These blogs or journals can also help educate people about the diagnosis the writer is living with, and they can build up a community of people who suffer from the same illness or loved ones who care about someone with the same illness. But primarily these blogs are focused on the writer’s life and thoughts.
- The advocate then starts to branch out.
Then there are blogs and online journals that the writer’s goal is to educate. On these blogs, you will find more links to research, news, and things that are happening that go beyond the life and mind of the writer.
- The advocate stretches their reach even further.
Then there are writers who blog, write articles, guest posts, do interviews, etc. to spread their influence and further their reach with the hope of educating more and more people.
- The advocate becomes interested in national issues regarding mental health.
Then there are people who contact their elected officials and make their voice and opinion known about policies that directly relate to mental health. These people may make regular calls to the offices of their representatives. They may also start online petitions and try to get other people engaged in changing everything from treatment to stigma.
- The final stage is service to others.
Then there is service; getting completely outside of one’s experience to reach out and help others. This service might be starting a non-profit, volunteering at NAMI, helping the homeless, etc.
There are times in our lives when we have to stop and look outside of ourselves. We have to put down our morning coffee and say, “I am tired of the status quo. I want to make a difference in this world. Things have to change.”
Today is one of those days. I am sure it is one of those days for many Americans. This year alone there have been 355 mass shootings in our schools, theaters, streets, and homes. I used to be afraid to go to Mexico because of the violence there, now I question getting on a bus or going to the zoo. Our streets have become a war zone and the casualties are mounting every day. If today is like most days this year, there will be another shooting today with more innocent lives brutally taken.
It is easy to put back in our earbuds and play our favorite music. It is easy to get out our cellphone and take a selfie on our way to work or to meet a friend. It is easy to close our eyes and think there is nothing I can do about this. It is easy to say, “I am helpless.”
The truth is you are not helpless. Changing this violence takes a few minutes of your time. There are things you can do to make a difference. Pick up the phone and call your local representative today. Pick up the phone and call your senators today. Tell them all that you want a sensible and immediate response to gun violence (the most obvious is background checks). Did you know even people that are on our “Don’t Fly” list in the United States can easily buy guns online and from gun shows? It is true and it is outrageous.
The other thing you can do is register to vote, and actually do it. Get out there and vote for someone who promises to address this issue. This is a time in your life that you can actually do something.
I have learned in this life that I am not powerless. I have money to spend (did you know every dollar you spend is a vote for something? If you buy it, that tells corporations, that you are okay with the place it is made, the way the workers are treated, the resources that were used to create it, etc. Money is a powerful vote). I also have a telephone and e-mail and write and call my elected officials regularly. (Does this make a difference? Yes, it does). I have a vote in every election and I get to the polls and I cast it.
There are other ways that I am powerful too. If I say that I care about climate change, then it is up to me to change my life – eat less meat, use public transportation, buy local, recycle, etc.
Our daily choices make so much more difference than we can ever imagine. Our daily choices impact corporations, politicians, the environment, and in this case, our action can be the voice of all those innocent lives. Those people who died deserve our voice and deserve our time.
How often in our lives do we get to say, “I did something that actually saved people’s lives?”
Here is a link to find the numbers for your senators and here is the link to find the number for your representatives. A few phone calls, a few e-mails – change is ours to help create. No more status quo – today is one of those days.
I received a notice from my insurance company that my doctor’s office had not billed them correctly. In the notice it showed the amount of the bill. I saw my psychiatrist for approximately 15 minutes and the bill was almost $400.
I know that if someone doesn’t have insurance and is paying cash, the cost goes down considerably because I negotiate medical fees for my father-in-law who pays cash when he sees the doctor.
Even if the cost goes down for people paying cash, how can a medical group justify charging my insurance company nearly $400 for 15 minutes of a doctors time? I don’t know how much of this fee my husband and I are going to have to pay.
I find this situation criminal. Everyone wants the severely mentally ill to seek treatment (because there can be, at times, terrible consequences if we go untreated), but at the same time, many people are blocked from receiving that treatment because of the cost of health care. We all know there are not enough community clinics, or places to be seen free of charge or on a sliding scale fee. Combine cost, and inaccessibility, stigma, shame and fear, and we have an unacceptable situation where it is possible that the most severe cases of mental illness are going untreated.
No one should have to suffer through symptoms that are manageable through medication/treatment. It can put the person who is ill at high risk of suicide or drug and alcohol abuse (to try and escape symptoms), and it can possibly put the public at risk.
I think everyone should have an interest in providing easy access to care for the mentally ill but a $400 bill to my insurance company says that this is not the case.
Please, if you ever get the chance to ask a question of one of the people running for a political office, ask them what they intend to do with the soaring costs of medical care, especially related to the mentally ill.
I urge you, if you can vote, do vote, and make sure you know where your candidate stands on this issue that can and does touch us all.
And as always, I recommend writing a few well thought out letters to your representatives, and even calling their offices. Our voices do make a difference. They really do.
$400? Something has to give and I don’t want it to be me, giving even more for care that is essential for me to function at all.
I saw a three-year-old boy in a red shirt and blue shorts, and baby shoes on his tiny feet. He was face down in the sand on the beach with the waves the only life left near his body. And I wept because his death was man-made and with no consequences for the world that let him down.
Several of my nieces and nephews are atheists and we have had many discussions about Christianity, religion in general, faith and belief in God. So often, people will say “If there is a God, why is there so much suffering?” And my response is always the same, “The majority of suffering is man-made.”
I believe that God gave us most of the resources to prevent suffering, but we choose greed, politics, hatred, self-interest and a number of other things as a reason not to respond. There is no good excuse for anyone on the planet to go hungry. We have the resources to feed the world, and yet, there are people in the United States who are hungry, and people starving in various places of the world. We have the technology and money to provide clean water, and sanitation to the world, and yet it doesn’t get done. We have the means to vaccinate children to protect them from so many diseases that cut their lives short. And then there are the unspeakable tragedies of war – man-made killing and suffering at its most extreme, violent, and hateful.
Of course there would still be death and suffering even if we used our resources to truly help one another, but how different those deaths would be, and how different the experience of suffering would be if the person who was ill, or injured, or who had lost their home and family to an earthquake or tornado, knew that the world was a caring, gentle place, and that people would work together to ease their pain as much as possible.
Open arms. Open hearts. Open wallets. Action. Dedication. Compassion. Love.
You can tell me that “A Good God wouldn’t allow so much suffering.” And I will tell you that humanity is responsible for most of that suffering.
I saw the father of the three-year-old weeping. At first he held his three-year-old son, and then when that boy drowned, he held his five-year-old son, and when that boy drowned, he held his wife until she too died in his arms. There are only people to blame for the suffering of these lost lives and for the survivor’s grief. People created this tragedy.
God gave us the resources to ease each other’s suffering, but the resources are divided unevenly causing injustice, tragedy, and war. No matter how much you want to blame God, it would be more accurate to point at people, and in some cases, a mirror.
Yes, I have paranoid schizophrenia, but I count myself as one of the lucky ones.
I have a supportive husband. I have a supportive family. I have supportive friends.
Those facts make me extremely fortunate and help keep me on medications that work for me.
Talk about luck.
I am not treatment resistant.
Recently, I have read about people who do all they can to get well, and they still hear voices.
That terrifies me and hurts me so deeply I can barely breathe when I think of it.
I know what it is like to hear voices. I know how it cuts you off from the world, and how it can feel so terrifying you believe you have died and gone to hell (I don’t say that to be dramatic. The voices can be so terrifying, and your thoughts can be so frightening it is possible to really believe you have been sent to hell). And if you end up believing you have been sent to hell, you wonder what it is you did to get there, and you are certain you will never get out.
That is hopelessness; terrifying voices that will never stop. Situations like that are all too real for people with schizophrenia, they are what drive us to suicide, or the voices tell us to commit suicide, which has happened to me several times.
There has to be something we can do for those people suffering from schizophrenia that are treatment resistant, or don’t have access to treatment. We must find a way to ease some of their suffering, some of their fear, some of their confusion and pain.
I ask myself, when I am in the middle of a psychotic episode, what do I need more than anything? The answer is comfort and safety.
I am going to ask all of you who live in the United States to do something, and it should not take more than five minutes. Please write your congressperson an e-mail, you can find them here: http://www.house.gov/representatives/find/
In your e-mail, ask them to put more funding aside for mental health. You don’t have to say more than that. A quick e-mail that lets them know you want to see the issue of mental health addressed in this country. Contacting your congressperson can really work. You can call them if you don’t want to send an e-mail. I call them regularly.
Have you ever given a dollar to someone who was talking to themselves on the street? There is a good chance that person, the one gesturing and carrying on a private conversation, has schizophrenia. Have you ever wondered what you could do for that person so they wouldn’t have to live in such terrible circumstances, and didn’t need to beg for money?
I know what you can do, and it is worth more than a dollar bill. It could be worth people’s lives. Call someone in Washington D.C. and let them know you care about the mentally ill and their plight.
I am fortunate.
I plan to use that good fortune to help stop the voices for those that medication would actually work for if they had access to it, and to help comfort those who it does not.
Be the voice that saves a life from voices that could end it.