Sunday, May 04, 2008

Adventures in advocacy

I don't know how I'm supposed to get this darn paper written if I can't sleep the night before the day I'm supposed to write it...

Anyway, I've submitted my op-ed piece to the New York Daily News. They run a lot of editorials and articles about how dangerous former mental patients are, and I sent in my piece arguing that most former mental patients are no more dangerous than most people. Which, statistically, is true and there's plenty of evidence to back it up. I've been having a little back-and-forth with the Daily News opinion page editor -- call him "Opie." I originally sent it to him about a month ago with this note:

I request that you run an opinion piece to counterbalance your editorial, "This is crazy" (4/7/07). The relationship between mental illness and violence is complicated, mediated by gender and substance abuse. Most gun violence is committed by men in their twenties who drink, and most people with a mental illness history are never violent.

I have a master's degree in psychology, a master's in clinical social work, and a diagnosis of bipolar disorder. I'm an Ivy League graduate and a devoted aunt. But many would judge me by my diagnosis alone -- and violate my privacy by including that information in national databases.

That's not fair to me or the vast majority of people living with mental illness. We've never committed a single violent act. Your readers deserve to know that.

Thank you for your consideration. Please let me know if you would like to see the piece.

Opie responded:

Thanks for sending your note. Is there something in particular you’d like to advocate for, other than a more balanced understanding of who mentally ill people are? That in and of itself doesn’t seem like enough to hang a piece on. If, however, that basic realization leads to a bigger argument, it could hold up as an op-ed.

The argument is that most former mental patients aren't violent and it's wrong to treat all of as though we are. I thought I'd made that pretty clear, but I wrote back:

Thanks for getting back to me.

Every day 81 people die from gun violence in our country. The percentage of those killed by random strangers with mental illness is tiny. The real operant factors are easy gun availability, age, and gender. Most homicides are committed by men in their twenties -- with or without mental illness.

But the media only portrays violent, "deranged" people who kill strangers at random. You never read about people like me, who are living successfully with (or despite) a mental illness.

I wrote the piece from my personal perspective -- how people view my accomplishments (Ivy League undergrad and master's degrees, Phi Beta Kappa, etc.) and how I'm afraid they'd judge me if they knew I also have bipolar disorder. I'm also concerned about my privacy rights; I don't think gun dealers (who in my view are quite morally suspect since they deal in death and destruction) have the right to know about my diagnosis, since the chances of me committing gun violence are incredibly slight. Yet I'm tarred with the same brush as every isolated person with a mental illness history who commits a violent act.

I hope this clarifies my intention. I'm taking the liberty of attaching the piece. It's bylined "Ayelet Survivor," the pseudonym I would need to use if it were to run. Thank you again for your consideration.

I didn't hear from Opie for a while, and I was busy with school and my internship. Then two Daily News articles on May 1 caught my attention, and I wrote Opie again (while getting ready for my first date with SB, no less):

I have not heard back from you concerning my opinion piece about the stable, nonlethal, and nonthreatening people who constitute the vast majority of "former mental patients." Today your paper had two articles focusing on the minority of former mental patients who act violently or threaten violence:

Uma Thurman testifies against 'stalker'


Lovelorn loony sparks gun scare panic on City College campus

Not only are these articles unbalanced in that they do not provide information about the majority of people with mental disorders, the second headline uses an inaccurate and tasteless term, "loony," which refers to the outdated notion that people with mental illnesses behaved increasingly unstably as the moon waxed or waned.

You don't call African-Americans "niggers" in your headlines. You don't label Jews as "kikes" or Latinos as "spics." The term "loony" is just as offensive to people with a mental health condition as any of those terms, and thus your use of it is incredibly inappropriate. A little headline alliteration does not justify slandering an entire category of people.

Given the appearance in today's paper of these articles and the use of this extremely offensive term, I strongly believe it is even more important that you present a point of view from the other side of this issue. I again request that you consider using my piece under a pseudonym or commissioning one from the National Alliance for Mental Illness (NAMI). I am again attaching a copy for your convenience.

I cc'd a bunch of people, including my NAMI media/advocacy group and a number of folks who work on antistigma advocacy, including a virtual friend of mine, David Gonzalez. He and I have never met in person, but we've corresponded and I've used information from materials he's created, including videos and websites, in my work. Then I went on the date.

Opie wrote back about two hours later:

Thanks for the note, and sorry I haven't gotten back to you. Honestly, we've been swamped and hadn't made a definitive decision on the piece. We'll do that soon and let you know. Sorry about the wait.

That was fast.

That was fast! Thank you

I wrote back, thinking Opie would leave it at that, but he didn't.

I just want you to understand that we haven't intentionally ignored your submission. We're always juggling lots of pieces. Thanks.

Like I didn't know that? I forwarded this to my NAMI group and a bunch of antistigma advocates, appending the note:

I think Opie doesn't think I'm very bright...

David wrote back to me and the advocates:

I hope that Opie won’t mind if I point out to him that according to the Daily News’ own editorial "Eliot, Mike you must act" (2/21/08), acts of violence committed by “the mentally-ill” in NYC occur four to six times a year"

What this editorial neglected to mention is that five to six hundred homicides a year occur in NYC. So, if we accept this editorial statistic as fact then that means that “the mentally-ill” in NYC are responsible for 1% of the annual homicides in NYC. Is this the quantitative and empirical evidence that the Daily News uses to justify its misleading reports and editorials, or does the Daily News know something we don’t know?

That's an excellent point. I wrote back:

David, please point that out to Opie. The more voices of reason we raise, the more they will have to listen.

Opie weighed in again:

Thanks. No need to copy everyone on every note, but if you want to, that's fine.

I hadn't realized David had added Opie to the group of people I was keeping in the cc: loop. I sent his response to my NAMI friends again:

Snippy, isn't he? ;)

Professor Supportive, whom I've also been cc'ing, had this to say:

Snippy is right -- ugh! But it does seem that you have made a dent at least, which is excellent.

David wrote to me again:

I did send an e-mail directly to the editor: "I think I can safely say that Ayelet's opinion piece accurately reflects what most of us are feeling."

His reply to me was: "I don't know whether we'll run it, but I appreciate your input."

I want you to know that I whole-heartedly support your opinion piece and I’m willing to help in any way that I can. You are an amazing advocate. It’s very disappointing to me that there are not more people like you in our community. Although I’ve never been fortunate enough to meet you, you are truly one of my heroes.

I'm his hero? He's the one brave enough to put his real name on his work! All I did was write an op-ed that might not even run.

David, I can't be your hero because you are MY hero!!! (And that editor is a tool. Still, a tool can be useful. If he runs the editorial I'll definitely let you know.) Sincerely -- the videos you make, the websites, and most of all your courage to live openly as a person with an illness. I am in awe.

I hope we can meet soon. I've got finals this week, but after that I'm somewhat freer. I'm interviewing for jobs but I would love to have coffee with you and talk about things.

Also, one of my classmates, Suze, is a documentary filmmaker. I'm still not 100% clear on why she went to social work school, but she's awesome and she's doing something for NPR about living with a disorder. I'm going to send her an email with links to your websites and CC: you. You two should definitely be in touch. She knows I do advocacy stuff but doesn't know I have a disorder.

I hope you're feeling good, and I'm so honored that you find my work impressive.

David responded:

Thanks for your e-mail. I would absolutely luv to meet you. I think that meeting you would definitely lift my spirits, because I’m feeling very discouraged right now due to the lack of unity within our community. So much so, that I’m seriously considering relocating to California.

I recently sent out a mass e-mail titled “an urgent appeal for unity” because of the current state of public hysteria driven and fueled by the non-stop negative media reports and editorials and to make a long story short - it was quite possibly the most foolish thing I have ever done. The level of distrust amongst our leaders and the outright animosity left me aghast (wow, I rarely use that word, lol). There was no willingness whatsoever to put their petty differences aside and unite for the sake of confronting and challenging the media.

Thanks also for the compliments on my video clips and websites. Believe it or not, you are partly responsible for that because I did all that with no budget whatsoever and you were the only person who ever sent me a donation when I had posted a link on CineMania (now requesting donations. I didn’t get so much as $1 from anyone else. I got so discouraged that I actually took the request link done after about six months of nada, zilch.

Had it not been for your donation, I would have probably taken the website down too. That’s a true story!

Imagine the level of work I could have done if I would have had a budget. I had the ideas and the ability -- but not the money. I had to literally "create something out of nothing." So I would luv the opportunity to work with an established documentary filmmaker.

Once again, I’d luv to meet you. Let’s consider getting together one day for lunch - or even better - getting together on a weekend so that we can have time to talk. Let me know if that works for you. Thanks again for your thoughtful and encouraging email.

Now I feel bad for not having told him, when I got that email, that I thought it was a great idea. I'm surprise so many people reacted so negatively to it. This is what he sent (2/19/08):

"Our human rights should not end where our psychiatric diagnosis begins!" Ron Schraiber, People Say I’m Crazy

Dear Colleagues and Peers,

As most of you probably know by now, there has been unending stream of news reports this past week demonizing the whole mental health community. This has been an overt media attempt to imply that we are all time-bombs just waiting to explode. Since Sunday evening I have had to leave my TV off because I was literally getting ill from the non-stop reports.

And so I am pleading with all of you to unite for the express purpose of confronting what is potentially the greatest threat to our self-determination and on-going recovery.

I ask to you to envision an event so big, so gigantic in its scale that that the media would have no choice but to notice us - even if they didn’t want to.

An event that would do for the self-help/peer support movement what Woodstock did for rock...

An event that would be open to the general public - not just "consumers / survivors / ex-patients" – but to their family members, providers, college students, and anyone who supports our stand for justice and equality.. .

An event that celebrates the history of the self-help/peer support movement...

An event that celebrates our diversity...

An event whose guest speakers and entertainment would be provided by the founders, the movers and shakers, and the up and coming leaders in our movement...

An event so spectacular that even those who could not attend for logistical or practical reasons would be able to watch us with pride over the internet or on TV...

An event whose very participants would welcome those attending, serve as guides, provide any necessary security, take turns overseeing comfort stations (can you imagine the stigmas that would crumble under such an event)...

An event that would offer hope and inspiration to society’s most disenfranchised and marginalized people.. .

An event that would shake the foundation of the psychiatric community down to its very core.. .

An event that celebrates our humanity.. .

An event whose time has come...

Is such an event even possible? Only if you dare to dream!

I’m sure no one ever thought Woodstock would ever be possible.

Who among you dares to envision such an earth-shattering event?

An Urgent Appeal for Unity, David Gonzalez

This is part of the reason I wanted to introduce him to my filmmaking classmate, which I did with an email:

Hey Suze! How's your final paper (ugh!) going? I'm dragging, but hopefully I'll pull it off.

So my friend's name is David Gonzalez (I'm cc'ing him on this), and he's brilliant. He creates websites, dissects anti-mental illness expressions in popular culture, and creates trenchant videos about stigmatization.

I've told him about you. I think you two should definitely talk.

See you Wednesday, Ayelet

I also wrote back to him:

Hey David -- I'm actually going to California (briefly) after graduation to visit family. I hope you don't get too discouraged. I'm surprised by the reaction you've gotten from the mental health community -- I thought your idea was brilliant.

Have you ever gone to a NAMI-NYC media & advocacy meeting? I don't know if that's your speed, but I've found them supportive and inspiring. I haven't been in ages because of school, but after I graduate I'm going to try to start going again.

When I get back from Cali I'll get in touch with you and we'll make plans to meet up on a Sunday. Hang in there. Your ideas are timely, relevant, and essential.

Now I'm sleepy again. Blogging must be good for insomnia.
Copyright (c) "Ayelet Survivor"

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