Friday, December 31, 2010

We need a revolution. Down with inequality.

"You don't ask permission to take to the fucking streets. You take to the streets and you do not leave. People are invariably arrested, injured, even killed when they take to the streets. There is a very strong will that wishes to suck the earth dry and make a tonfuck of money doing so. This power is in command of all law enforcement and military on the planet. So, yes of course when folks go up against it without tidy permits and tight schedules, this power is threatened, and all it knows to do is attack.
This is what happens when people oppose forces such as corporations and/or their governments: people die."
~Inga Muscio, Rose: Love in Violent Times

Rose is an excellent book. Inga Muscio is a feminist, and very intelligent woman who writes about the many ways in which violence influences all of our lives. The violence she describes is not just the obvious variety: war, rape, murder outside war. It is also "passive violence", such as: "Betrayal, sabotage, creating hierarchies, lying, cheating, stealing, racism, homophobia..." and many other things. I just started reading it tonight, but I'm in love with this book about violence and love.

The part that I was just reading really struck a cord with me. Muscio writes about being invited to speak at an anti-war protest in Washington D.C. at the start of the war on Iraq (which she would refer to as a brutal occupation and not a war). She was disgusted by the hierarchical nature of the rally and its speakers, and the behavior of some of the people in charge of the the rally.

I believe she was talking here about a protest that I helped plan myself. I was on a committee to plan a rally for a women's antiwar organization back in 2003. I lived in Alexandria, Virginia then. I was psychotic, but not to the point that I could not function or that it was always noticeable. I was very physically ill, and was using a rented wheelchair to sit at the White House in vigils against the upcoming war which we were hoping would never start. And I got onto this committee. The organization has since grown to be known world-wide, but at the time it was very new.

The hierarchical structure of the planning committee was horrible. It was like this: there were some of us hometown activists, people who lived in the area and were on the streets protesting and were there to work as activists do. Then there were these paid staff members who were brought in from a company that helped fund the organization who decided to derail our plans and tell us all how it was going to be done. I spoke up in disgust at this. I said in an email, a quote by Audre Lorde, "The master's tools will never dismantle the master's house". Coincidentally, in the part of her book where Muscio describes the situation she found at the rally in D.C., she mentions that exact quote.

I also created a web page, which still exists, of housing such as campgrounds, hostels, and the like where activists coming to the march could stay, since the corporate folks who took over the planning of the march never did any such thing. They expected, apparently, that all the activists would stay in Washington D.C. hotels.

I was also insulted when my ideas for wheelchair-equipped vans to allow people with disabilities to participate in the march were criticized because of whatever reasons having to do with money and things being too complicated for that.

In the end, on the day of the march, I didn't feel well, and I didn't go. I had helped plan this thing that about 10,000 people attended, and I didn't go. And I got no credit for helping plan it. None of us unimportant people got any credit. The celebrated famous authors and journalists and the celebrity activist who created the organization got a lot of press and attention and made sure that they were arrested so it would make the news, though people in the march were not warned they might be facing arrests, which is rather rude considering not everyone can afford to go to jail. There are people who have valid reasons to not be able to risk arrest. Those people weren't warned about the possibility.

I've always regretted not going to the march, but only a little bit. I got so disgusted with the dynamics of the planning crap that I didn't really want anything at all to do with this organization after that. I never took part in their activities again.

The positive parts of this experience where that I got to see Alice Walker and Susan Griffin speak in public. They were there for the march, and the night before it, they spoke at a ceremony held at a college. I was with an acquaintance who was doing recording for the local NPR public radio station, and she took me upstairs afterwards where I was able to meet the musicians who played at the ceremony. I can't remember their group's name right now, but it was a Native American group of women and talking to them I found out one was related to a poet I like named Joy Harjo. They are cousins. But I almost didn't get back there to speak to these people because someone acting as a security guard wouldn't let me in until my acquaintance told him I was with her and i was there to record for the radio. Only important people like that were allowed back there. This is what I mean about hierarchical structures. The "important people" matter and the rest of us don't. Muscio discusses that point brilliantly in her book.

As I read this book, I think of the violence that has been perpetuated against all of us who live with mental illnesses. For most of the history of man, we have been abused. We have been labeled with all kinds of stigmatizing, horrible terms, and we have been deemed subhuman, chained to walls in sanitariums and forced through tortuous insulin treatments. Locked up like Charlotte Perkins Gilman in "The Yellow Wallpaper" with the rest cure forced upon us. We have been alienated, trampled upon, and subjected to all manner of bizarre treatments and experimental tortures expected to possibly help us get better. Even today, we take drugs to help our illnesses which, while helping us, also cause us to gain tons of weight, get diabetes and heart disease, and die early deaths. We are guinea pigs, put on drugs that have not been properly tested for enough years that anyone could know their long-term side effects. We are maligned in the media and shunned by our own families. We are arrested, locked up like caged animals in jail cells where we are dehumanized and left to suffer between the concrete walls with no medication, therapy, or help of any kind. We are left without shelter because we have no money due to our illness causing us to be unable to work, and we are ignored by society as we sleep on sidewalks before we get arrested for sleeping there. We are treated like shit.

I, for one, am sick of this entire situation. I would, as Muscio said in the quote at the beginning of this post, like to TAKE TO THE STREETS about it. I have gone to a million NAMI meetings now, and I love NAMI, but I do not see the change happening that needs to happen in this world if people with mental illnesses are ever going to achieve equality in our lifetimes. I have written to my legislators, written complaint letters to advertisers who stigmatize us in their commercials, posted flyers for NAMI meetings, attended conferences, and spoken at numerous places to dozens of people at a time. But I want to do more, and I want to see ALL of us do more. I want to see the collective power of people living with mental illnesses that could manifest if we banded together and worked for equal rights, right now.

Of course, I know this isn't going to happen. People have a lot of apathy about the way we're treated, because we feel defeated by it. People sometimes don't even realize they're being treated unfairly. But I want to see the day when I am not made to feel ashamed of myself if I mention that I have Schizoaffective Disorder and it affects my life. I want to see the day when my life circumstances are facts that I'm allowed to mention which are honored by people bearing witness to them and not shunning me into silence. I want to see the day when I don't have to feel like a freak of nature anymore. I want to see the day when there is enough care about these devastating illnesses that there will be more government funding for research and for treatment. I want to see the day when everyone can get mental health services whether they have money or not, and when they can get them in a timely manner. I want to see an end to the homelessness of people with mental illnesses. I was homeless on several occasions, and though I never lived on the streets, I see myself in ever homeless mentally ill person that lives out there and has no place in this world where she fits in and where she matters.

I'm tired of the goddamned status quo. It's time for it to go.

I'm also tired of the rapes that happen every day on this planet, the torture, the occupations of lands deemed occupy-able, the contamination of our food by Monsanto and friends, the destruction of ecosystems, the sexism rampant everywhere, the racism, the homophobia, all the crap that goes on which we need to rid ourselves of and which we probably never will.

One of the things that bothers me a lot is hierarchy. I do not feel comfortable in the women's organization I'm part of because I am on the "board" of the state, and I do not want to be on the board. I never really wanted to be on it. I was asked to do it, and so I agreed. But I don't feel right about having a position of authority, and I don't really like feeling responsible for helping to run this whole organization. I would rather work together with many other women to create change in the world, instead of worrying about how to increase the membership of the organization and feeling totally incompetent because I don't know how to do so. I've discussed some ugliness that's taken place in this organization before here, and I am still considering leaving the board, though I may stick it out till my term runs out so I don't have to be a quitter.

I'm also second-guessing the college major I chose. I chose it, as I've mentioned here before, because of the logistics of me getting a Bachelor's degree being difficult. I do not feel up to moving to another city, as I would have to do to be able to get a degree in social work. I do not have the finances to move, do not want to lose my therapist and doctors, and do not have a job anywhere else but here. So I opted to go for a degree I could get here, and one of the few that interested me, at my small college where there are only a handful of Bachelor's degrees, is Public Policy and Administration. That's the program I'm starting in January. But I'm not sure I want to be in that type of program. I don't really desire to work in a bureaucratic environment for a government agency, and I'm afraid that this degree would lead toward such a career. I'm pondering what to do right now, but most likely I will stick it out for one semester and see how I like the first public policy class.

Hating hierarchy makes it hard to want to work for the government, you know.

Now that this post has twisted and turned in a few ways, I'm not sure it will make complete sense to you, but I hope you can follow what I'm getting at. I get very frustrated with the state of the world, and I find when I read books like, Rose, someone is finally speaking my language for a change. I don't understand how screwed up this planet is, due to the doings of mankind. I don't understand the hatred people have towards each other. I don't understand why the fact that I don't have a full-time job should mean that I'm not a worthwhile human breathing deserving of air to breathe. I don't understand why we are made to hate ourselves for being sick. I think all of these things are wrong. I think we have a right to be, just be, like everyone else, and not be insulted on a daily basis by discriminatory depictions of mental illness in the media and by people around us who have no education about mental illnesses and have no clue what hell we have lived through. I don't understand why there is not more compassion on this planet. And I really do believe, that at the heart of these problems likes patriarchy and lies hierarchy: two things we could all live without, and live quite happily.

It's not enough that we have to survive the violence reeked on our minds by these brain disorders. On top of that, we have to survive the violence perpetrated upon us by everybody around us for the fact that we have the brain disorder in the first place. This oppression is unfair, and not right, and it needs to end. When are we all going to do something to end it?

Sunday, December 26, 2010

painful holidays

My head is spinning. I have a headache. I can't sleep. I need to decompress.

The holidays are always bittersweet with my family. I love Christmas, on the one hand. There are the good things, the laughter, the giving and receiving of gifts thoughtfully picked out, the funny pictures we take. The fact that I'm actually seeing my dad and my half-brother and half-sister who I only see on holidays.

Then there is the crap. There is the overwhelming tension and stress, which starts at my mother's house and continues at my father's. There is the fact that my mother is lonely and we always have to leave her alone to go to my dad's, and it always upsets her. There are the awkward gaps between my dad and some of us, the lack of closeness that nobody intentionally created and nobody knows how to fix. There is the alcoholism which runs rampant and unchecked in my family, or semi-unchecked. There is the fact that I know someone is secretly getting drunk. There is the fact that my dad drinks and offers wine and beer to someone else who's a self-proclaimed alcoholic and supposedly doesn't drink. There is the being stretched too thin that comes with having divorced parents. There is the awkward lack of knowing what to say to people in your own family because you really don't know each other at all, and you have nothing in common. There is the trying to blend in with people who are joining your family. There is the way my mom wishes everything was better than it ever is and gets angry at other people because it isn't.

There is the fact that my dad still has not said a word to me about my college graduation which took place a week ago, and never bothered to respond to emails which I sent him about it, including one that had a link to all the pictures. Yet his girlfriend did mention it. And he didn't join the conversation, because he is not only not proud of me, he thinks I am a failure and that it is stupid of me to even be trying to go to college at my age. And he's ashamed of me.

My dad still hasn't really forgiven me for things I said about him eight years ago. I said things when I was psychotic which I only said because I was psychotic. Sometimes people do things they can't undo. I apologized for all this years ago, but because you can't really pick up the pieces that easily after you don't have any communication with your dad for six years, there is still no closeness between us at all. And I miss my dad being like a dad to me.

For those new to this blog, I will explain. When you are psychotic you have delusional thoughts. One of my delusional beliefs was that I had been molested by my dad as a child. I reporter this to social services a few years ago because I was worried about my youngest brother and sister. In a psychotic state, what you think is real does seem very real. When I realized years later that I had probably not been abused at all that way, I apologized profusely to my dad. I thought we came to an understanding when I was diagnosed with Schizophrenia that the reason I had those thoughts was the psychosis. I thought we would put it all behind us. But I guess some things are so major you can't put them behind you. And this was apparently one of those things. So, no, today, five years after I apologized and had an explanation, I am not close with my dad.

Mental illness and alcoholism both run rampant in my family and nobody talks about any of it. I am tired. My dad is not interested in NAMI or in what I am doing with public speaking. He's ashamed of me, and he doesn't want to hear about any of that, so I don't talk to him about it. I doubt his fiance even knows I have a mental illness that I'm getting treatment for, or if she does, I wouldn't know that she knows because it is all to be hush-hush and not spoken of in my dad's house. I am tired of having to feel ashamed of who I am.

No, I am not a success compared to my cousin who is a lawyer, but yes, I am a success, damn it, in the case of someone with Schizoaffective Disorder who has gotten better and fought hard to deal with this illness every day of her life. Why doesn't that count for anything? No, I am not 17 and in college at a state university like my youngest sister. I am 35, and I just got a two-year degree. But I got a degree. That should count for something. That should matter to my dad. He should care. And he doesn't care.

I'm sick of the stress that I get from being around my family. It starts out all good and well and I'm glad to see them all. But I'm sick of the lifelong tension that has to be there, the anger and hurt and the lies and deceit of the alcoholism, and the fact that nobody's really very happy at all. I'm sick of that. I'm sick of watching people destroy their lives with untreated, or incorrectly treated Bipolar Disorder and active alcoholism. I'm sick of that. I'm sick of the fact that I always feel the weight of the world on my shoulders, and I always worry more about everybody else than they even worry about themselves, because I always feel like it's my responsibility to do so. I'm sick of that. No, I can't fix their lives. No, I can't give them advice, because none of them take my advice when I do give it to them. And no, I don't really need all these people's problems when I have enough of my own problems already, which I deal with all alone.

In the end we retreat to our own corners until the day ends. As my dad would say, it's every man for himself. We all live our own quiet lives of desperation. We all can only hope to help ourselves. In my family there is a lot of pain. And being around all those people with their pain in one day is too much for me. I cannot take it.

For weeks, I would drive around singing Christmas songs in my car, and enjoyed shopping for presents. But in the end, I'm really glad Christmas is over, and once again it was rather disappointing. But I'll cherish the good memories. The laughter, the goofy videos my brother took, the good food, the taking of pictures, the playing of Trivial Pursuit. I'm really grateful for the lovely presents I received. And there's a whole year before I have to do it all over again. Thank the universe for that.

Right now I just long for sleep and the ability to stop worrying about my family. I suppose I should go back to those Alanon meetings I was going to a few months ago. But I'm not sure I want to do that or have the time. Mostly, I just want to stop feeling other people's pain all the time. I'm just not sure how to stop doing that. I can't rescue the world, and the feeling that it is my duty to do so is really causing me a lot of unnecessary stress that is not good for my mental state. I'm open to suggestions.

Wednesday, December 22, 2010

Christmas/Holiday music

Since the holiday season is upon us, I thought I'd share some of my favorite Christmas songs. I'm not religious at all, and I realize everyone reading this might not celebrate Christmas. But some of the songs that come out of this holiday are great ones.

My favorite Christmas song is Dar Williams, "The Christians and the Pagans". It's a song about coming together despite having beliefs that differ, which should be what this holiday season is about, if you ask me.

Here's Sufjan Stevens', "Come On! Let's Boogey to the Elf Dance". I love this:

I think one of the more beautiful, modern day Christmas songs is, "River", by Sarah Mclachlan:

An all-time favorite of mine is the classic, "Happy Christmas", by John Lennon:

Also always enjoyable is "Christmas Wrapping" by The Waitresses:

And another lovely one is Sara Bareilles' "Wintersong" with Ingrid Michaelson:

I also love "Christmas (Baby Please Come Home)" by Death Cab for Cutie:

And another cool one is "Last Christmas", the Jimmy Eat World version:

Finally, from Bright Eyes, "Have Yourself a Merry Little Christmas":

There are other great Christmas/holiday songs to be found online as well. I like a lot of the punk rock and indie versions of Christmas songs.

I hope you enjoy listening to some of these, and thank you for everyone who has come here and read my blog this year, and every year since 2005. I really appreciate you taking the time to do that, and I hope you have a great time over the holidays.

Saturday, December 18, 2010

Graduating from college despite serious mental illness

The first time I started college was in 1993. I was suffering from Anorexia at the time, and suffering is a very accurate word in this sentence. I literally couldn't think about anything but calories and fat grams, which controlled my life. I recall clearly sitting in the library at a desk with a calculator, going over my calorie counts for the week (yes, the week, not just the day; I was quite obsessed), when I was supposed to be doing math work or something for my speech class. I dropped out pretty quickly after school started.

I didn't go back to school for a few years. In the 1996-97 year, I was dealing, still, with the eating disorder, but worse, at that time, was my problem with depression. I was not correctly diagnosed with Schizoaffective Disorder until 2005/2006, so back in the 1990's, I was going under other diagnoses: steadily worsening chronic, recurrent Major Depression and Cylcothymia, and also Attention Deficit Disorder. I was on medications some of the time, when I had insurance and when I could afford the part the insurance did not cover.

I met a professor that year who changed my life. I will call him Dr. B., because he is a PhD now, though he wasn't back then. He taught my English Composition class. He thought I was intelligent. Sure, I had always been a good student - until I had decided to drop out of high school. It was hard to feel smart after making that decision. I was in my 20's now, but this professor thought I should try to go to a more difficult college than the community college where he taught. He encouraged me to take the SAT, which I had never done in high school. I took it, and got an 800 on the verbal section, which was a perfect score, and an average score on the math section, as math was always really hard for me. When I got those scores in the mail I could not believe them. I had studied for the test, with one of those SAT prep books, but I had not thought I would do so well.

Yet, school was hard, not easy. I had no ability to memorize formulas for math. I went to the office for students with disabilities as this same professor encouraged me to do, and the advisor there looked at some I.Q. test scores I had from when I was first in a psychiatric hospital at age 16, and said that I most likely had a learning disability when it came to math. Some expensive tests would be required to find out for sure, so I never found out for sure. But I did get help through her office, since I had the other diagnoses. I was also just newly living with Fibromyalgia and Chronic Fatigue Syndrome at that time, which were quite debilitating. They worsened my depression.

There were days that I would sit in a private room, or a cubby-style desk in the library at that school that I have now been to a million times, and I would just contemplate death. I would read depressing poetry and I would think that I needed to kill myself. I would cry. Or I would just sit there with my head down on the desk and try to concentrate enough to study. I got good grades. But I was having a really hard time with life. I dropped classes, and I wrote depressing entries in a journal for my composition class read by Dr. B. (who I would maintain a friendship with, mostly via email, that continues today).

In 1998, I moved to Maryland. Things weren't working out with me living with my mother in Florida, and I wasn't doing well enough physically or mentally to work full time and support myself. I went to live with my grandparents. I was 23. I enrolled in the honors program at the community college there where they lived, because there were honors classes I wanted to take. I was serious about studying and I got good grades. I was encouraged that year by another professor who changed my life. She encouraged me to apply to other colleges, the same way that Dr. B. had done before. I had never actually done it before, but this time I did. I get admitted to every college I applied to, but the big deal was that I got into the Ada Comstock Scholar's Program for students above the traditional age at Smith College in Massachusetts. I went there for a visit and fell in love with Northampton. I couldn't wait to move there. But apparently it was not meant to be.

The year I got admitted to Smith was the year I officially became delusional. I began to hallucinate on occasion, and I got into a fierce fight with my dad which ended my ability to live at his parents' home anymore. I became homeless. I ended up moving into a homeless shelter rather than Smith College. I was about to give up on my college dreams.

You see, I had always had these college dreams. I had always, all my life, wanted to go to college. And especially a good college. I didn't dream of getting married and having a baby much, like some girls do. I didn't know for sure what career I wanted. But I knew, more than anything, that I loved learning and I wanted to be in a college. Even when I dropped out of high school, I planned as I did that, to still go to college. My parents had not gone to college until my mom went back to school when she was in her mid 30's after they got divorced and she needed a career to support herself and us kids. I had not had a lot of guidance on how to apply to college, or any offers for my dad to help with my tuition if I went to school somewhere. But I wanted to go.

So when I got that opportunity for Smith and couldn't grab it, I gave up. That was 1999. I did not end up completing another college class until 2007.

After I was lost from the world for years, after all the hell of psychosis, after being homeless repeatedly, and after numerous hospitalizations and suicide attempts, I finally was diagnosed correctly, and I finally got the help I so desperately needed for half my life. After that, I got an apartment with my boyfriend, and I got a job, and I went back to school. The school I went back to was that same community college with that professor who encouraged me to go somewhere else; that same school where I had spent those days with my head on desks, my mind wandering out the window during math classes, my soul feeling crushed as I crumpled up into a ball on the floor of a bathroom stall so many times. I went back there. And I was determined that there was no way in hell that, THIS TIME, I would give up. Nothing, nothing, nothing was going to make me give up again. If you've read posts like this one, and this one, you'll know that it was not always easy to stick to that commitment.

Today, I walked down the aisle of a church, not for a wedding, since I never cared much about having a wedding, but for my graduation from St. Petersburg College, formerly known as St. Petersburg Junior College. I graduated today. And people who matter to me a great deal were there: my mom, my brother, my sister, and my close friend Kathy. (*I was disappointd my dad did not care to show up, but this really should have come as no surprise). I got to wear a goofy-looking cap and gown, smile for cameras and don an honors cord, because I managed to graduate with honors. It was a big moment for me. Afterwards, we went to a restaurant and my mom brought a cake she had made with the school's colors: blue and white.

I would never have gotten to this point if it were not for certain people who encouraged me along the way. Dr. B. and Dr. R. were chief among those people, but my mom, my brother (D.), my sister (J.), my friends, the people who read this blog, my case manager, my therapist, my doctors, and other people helped me get there too. I am so very grateful for that help and that encouragement. And I can say that I am proud of myself for this, too. Sure, I'm old to be getting a degree, and it's only an A.A. degree which is supposed to take 2 years, not 17 years. But I did it despite multiple serious chronic illnesses that are disabling to a great degree, and I did it in spite of the fact that I wanted to give up when I lost my chance to go to that elite institution in Massachusetts. I did it because getting a degree mattered to me, and I'm not done yet, either. In January, I start the second part of my Bachelor's program. I am looking forward to it, despite my nerves. It has taken a long time to get here, but I can say that nowadays, I can read without having to re-read everything 30 times; I may have to read it 5 times, but if that's what it takes to get a good grade, I am willing to do that. I can remember much of what I learn in lectures now, which wasn't always the case, and I've also gotten help with tutoring from the office of services for students with disabilities. My brain has adjusted some, and I've learned how to use it so it can work as well as possible too. I'm able to get through school now, I think. So I will.

Don't give up on your dreams.

Saturday, December 11, 2010

What do we want? HOUSING! When do we want it? NOW!

In 1999, I was living in a homeless shelter called Hannah Moore in Maryland. I had become psychotic, though I did not know it yet, and it was very mild at that time, consisting only of delusional beliefs. I was also manic or at least hypomanic. I wasn't getting treatment for the mental health issues. I was physically quite ill, and was missing out on an opportunity to go to Smith College, because I was busy trying to survive each day. At the homeless shelter, people were being treated unfairly by the sleazy private company that contracted with the state to run this shelter, and so, I was reporting these problems to a non-profit pro-bono law firm called The Homeless Persons' Representation Project, which was already suing this company for violations.

It was at this time that, one day in a bookstore, I found a book called The Myth of the Welfare Queen, by David Zucchino. In this book, I found the stories of women who, like me, had ended up in serious poverty, and who were trying to survive. In some cases they were trying to organize and buck the system. One of these women, Cheri Honkala, was organizing a tent city in Philadelphia to demand housing for the homeless there. Her organization had taken over foreclosed homes for people to live in them while they were empty. She was a real activist, and not afraid to piss off the government. I quickly came to admire her. She created The Poor People's Economic Human Rights Campaign, which would later become a national campaign.

Yesterday, I finally met Cheri Honkala, 11 years after I read that book. She was in St. Petersburg for a march for the homeless, and poor in honor of International Human Rights Day, and to demand fair treatment of homeless people in the St. Pete area. I was there to join the protest, with a sign that read, on one side "Housing Is A Human Right", and on the other side, "Fund Social Services Not Jail Cells". One of the issues this protest was for, is that the current city government wants to house homeless people in what amounts to a "jail annex", according to homelessness activist, Reverend Bruce Wright of The Refuge.

People who are homeless are often living with mental illnesses. A statistic I heard at the recent state NAMI conference, from an expert in the field, was that 75% of the women in jails and prisons in this state have mental illnesses, and another statistic was that there were 1100 arrests last year in Pinellas County, where I live, of homeless people, for petty crimes such as sleeping on the side walk. It was also mentioned at this conference that people are sometimes more likely to get medications in jail than they are while living on the streets, and so some people think jail is actually a good alternative.

Another reason why I was at this protest, besides my own experience with homelessness in the past, when I was very sick and undiagnosed, was that my sister lived on my couch for several months this year, and is currently about to be evicted from her apartment because she needs a job and doesn't have one. My brother, who also lost his job and has no money is living on my sister's couch because his house was foreclosed on earlier this year. So at this march for homes, jobs, and economic rights, I was taking a stand for them, too.

We marched to City Hall, with TV news cameras filming us, chanting, "What do we want? HOUSING! When do we want it? NOW!", and "This is What Democracy Looks like!", and "They say cutbacks, we say fight back!". And on the steps of City Hall, Cheri Honkala spoke, a local musician sang some rallying songs, and the people took a stand for their rights. I don't know if it will make a difference to the people who work in that City Hall building. It might not. But we were there anyway, to use our voices. After the rally, the homeless people were provided food. And I was glad to have been there, because there is nothing I like better than being part of a protest for a good cause. It is inspiring, and energizing, because, after all, this is what democracy looks like. And it is a beautiful sight.

I was interviewed by a local news station, but I don't believe they aired the interview. They did, however, air some small coverage. And The St. Petersburg Times printed a brief story.

Tuesday, December 07, 2010

Where, o where is my place in the world? (and being an activist)

When I was really psychotic, somehow I managed to write an article for a feminist journal on disability rights and women. I believed, at the time, that I had survived all kinds of abuse, which I hadn't really experienced at all. I was very sick. The people running the journal didn't know that, of course, and so they published what I wrote. In that same issue was an article by feminist, disability rights activist, Laura Hershey. I just learned that she passed away on November 28th. This is sad news for the disability rights community. There is a good, little article about her on the blog Not Dead Yet. Back before I was diagnosed and long before I was involved with NAMI or any other organization like that, I was involved in feminist activism for women with disabilities. Some friends I met online and I created an organization called Sick Chicks and Twisted Sisters. In the early days of it, I created a website, which is still online as a resource, and we ran email lists for support and advocacy. I had a forum up on delphi forums ( eventually too, where there were chat rooms for support. I spent a lot of time online back then and not much time around people in person. All my friends were online friends.

I have really benefited from getting to know different women who have lived through different things, like serious chronic illnesses and disabilities, physical and psychiatric (which are, of course, also physical). I always liked the quote by Alice Walker, "I am an activist. It pays the rent for living on this planet". Being an activist, whether it is with anti-war/peace groups, a feminist organization, or a mental health awarness organization, is really how I identify myself. Sure, I go to school and I have a little job, but really what matters to me is being involved in human rights advocacy.

In the past two years, I've been really busy. As I've gotten more involved with NAMI and with a women's rights group that I've mentioned before, I have had a lot more to do as an advocate than I had for a while before this. This past Friday, I spoke to almost the entire staff of the community mental health center where I go for treatment, at a special education day that they had at a local hotel. I would never have been asked to do that if it were not for my involvement with NAMI and the public speaking I've been doing as a member of that organization. In fact, I feel almost comfortable now as a public speaker, something that I never thought I would be able to do at all just a couple years ago.

Speaking to the staff of the mental health center, along with some other consumers who spoke briefly, I was able to tell my story - the clients' side of the picture - to people who had never heard these details of anyone's story before. Some had, of course, many years of experience and had heard all kinds of stories, but many of the staff had not. My therapist and my case manager were both there, and they, and other people told me I had done a great job and that it had made an impact. I'm a little embarassed now, after the fact, about some of the details I shared, and perhaps the next time I do this I won't be sharing all those specific details, but I wanted to give them the picture of what it was like to be psychotic for years. I didn't tell them everything, of course. Some things I don't discuss anywhere, and some things I didn't have time to cover in the course of 25 minutes. But I told them as much as I could.

So that was a very positive experience, overall. On the other hand, in the women's organization I'm part of, I've had some negative experiences. There are some amazing, intelligent, dedicated and kind feminists in this organization. But there are also a few who are in a local clique that have treated me with great disdain and purposely excluded me from most of their meetings, due to some big nonsense that arose around money where people in the chapter I'm in, and people in the chapters they're all in disagreed. This situation has hurt my feelings, frankly. I don't like to sound weak and pathetic, but when people treat you badly, and you have no idea why, it's kind of hard not to feel insulted or hurt. I wanted to be friends with people in this organization, but for the most part, it hasn't worked out too well. I'm much younger than most of the members, and the ones in that clique are not interested in having me around. Who wants to go to places where they don't feel welcome?

I'm not trying to criticize this organization - just some specific people in it that have been a problem for me. Overall, I like the organization, but I'm not sure that I should have gotten involved to the extent that I did. I also got really upset more than once over this situation, feeling like a worthless piece of garbage, because it was like being rejected and I've experienced that before, as we all have. I also never feel like I totally "fit in" with this group because they have college degrees, for the most part, and/or families (partners and kids), and I don't advertise my mental illness to everyone I meet, so I never have a good explanation about why I have no college degree, no career, no kids or spouse. In NAMI, everybody knows why I am like I am, and I don't have to make explanations. But I also don't want to feel like the only place I can belong in the world is in NAMI. I am more than a person with a mental illness. I am a person with interests in many different things. I want to feel competent as a person in the world, not just competent at living with Schizoaffective Disorder.

I've always had a problem with low self-esteem. But when you live with physical and mental illnesses that are hard to explain to people or that you choose to not explain because of the judgemental attitudes and stigma that exist, it's hard not to feel like you just don't measure up to everyone else. I would like to never compare myself with others, but I do compare myself with them, and it always makes me feel lousy about myself.

Then again, I have been told by numerous people that they are surprised at how well I seem to be doing for someone who lives with Schizoaffective Disorder/Schizophrenia, because many people with this illness cannot work or go to school or do activist work. They're struggling just to keep their heads above water - the same way I was for many years. I guess I am lucky to be capable of handling what I do handle, and to be on medication that helps me to do so.

In the end, I do identify as an activist, and I don't think a college degree should be required for one to be an activist. That would be ridiculous. Anyone with passion about a cause can be an activist. You need no experience. You need no title. You need no "accomplishments" to be able to be an activist. I guess it's just been disheartening to feel like I don't fit in, even with other activists in this feminist group, because that is the one place I always thought I would fit in.

I always know that I fit in at NAMI meetings; and I am grateful for NAMI. This past weekend I went to a state NAMI conference, which I had a scholarship to attend, and I learned some things that I'll share in future posts here. There was a really intersting workshop on Schizophrenia. The best part was that I was surrounded by other mental health advocates.

Someday, maybe I'll feel as accepted in other places as I do in NAMI meetings. I want to feel like I belong in the world. Such a struggle it is to find that sense of peace. I feel like I have longed for it my entire life, and never quite found it. But I also feel like I'm getting closer to it than I ever was before.