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 (about.com) 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.


  1. 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. This is so powerful, and so true, it almost made me cry. You are inspiring to me, Jen, and thank God for activists like you.

  2. Thank you for the kind comments, Lil. I really appreciate you taking the time to read posts on my little blog. I'm sure you know, it makes writing so much more worthwhile when you know someone's reading your words. I can relate to many of the posts on your blog too. Thanks for coming by here!

  3. Hi Jen,
    I can relate to a lot of what you say, and there is a lot that needs fixing in the world - activists are sorely needed, especially in the area of mental illness.

    It sounds like the women's group you are in is not a lot of fun. It might be good to sit down and think about exactly what you put into it, and what you get out of it. How that equation works out may be useful in deciding what to do with it in the future.


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