Month: February 2024

On showing up

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At the beginning of my career, way back in the last century, I used to cover meetings. School board, town council, etc. And generally speaking, these public officials were playing to empty rooms. There were usually two or three residents who made a point of going to all the meetings, and a lot of empty chairs around them. Once a school board facing budget cuts suggested dropping, among other things, the late buses that help students get home from after-school activities. A roomful of families showed up at that meeting to tearfully beg them to keep those bus routes. The meeting after that? Empty room again.

It’s essentially the same situation now (with a particular exception; let’s come back to that). When I go to meetings—as a resident, these days, not as a reporter—there might be a few people there with questions for town officials, or people getting awards, or Boy Scouts fulfilling badge requirements. But at many meetings, there are plenty of empty seats.

I mention this because I was at a vigil for Nex Benedict over the weekend, and what the speakers kept saying, over and over, is that people say they’re LGBT allies, say they’re supportive, but don’t necessarily show up at the public meetings where rules or legislation affecting LGBT people are being determined, or where books featuring LGBT people are being banned.

That’s true. Who’s been showing up at public meetings over the past few years? Moms for Liberty, or groups that act like them. They tell school boards in towns they don’t necessarily live in to ban books they may or may not have read, and those books almost invariably feature LGBT characters (except when they feature Black characters dealing with racism, or Jewish characters dealing with antisemitism). And they harass librarians in order to get their way. I wrote about this a few months back. Banning books about LGBT people, or banning a Pride flag raising or “safe space” rainbow stickers in schools, are ways of telling LGBT people they aren’t welcome or they shouldn’t exist.

At that vigil for Nex Benedict, multiple trans or nonbinary speakers said they’d never expected to survive to their thirties, or forties, and they wanted trans and nonbinary kids to know they could make it to adulthood, too. They wanted kids to see there was a future ahead for them.

That’s so poignant, and so important.

People who show up at public meetings are more likely to get what they want from public officials. So attend your local meetings. Make sure you know what’s going on in your town. If you disagree with what public officials are saying or doing, make sure you tell them so. And if members of minority groups are being attacked, show up and show them they’re not alone.

Why I talk about antisemitism

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A few years ago—pre-pandemic—I attended a workshop on diversity in children’s literature. Before the workshop leader got started, she had us write down and then share the parts of our identities that made us “diverse,” I think to prove the point that we’re all more diverse than we realize. I hesitated before writing down Jewish. Did that count as diverse? I wasn’t sure. Judaism, or religious minorities generally, never seemed to be part of these discussions, and I hadn’t quite gotten to the point of writing Jewish characters in my fiction. But I shared it anyway.

I don’t remember much of the workshop, except that she said diversity was important, which seemed like a pretty basic thing to agree with. Afterward, I was handing in the post-workshop survey when the leader and I got to talking. She remembered I was Jewish. And she started complaining to me about the Hasidic Jews in Rockland County, NY. Oh, they’re so rude, oh they’re so pushy, oh they’re so etc.

I stood there in shock. What was I supposed to say? Was she telling me this because she expected me to agree with her, or to apologize to her on behalf of “my people”? And hadn’t she just run an entire workshop on the importance of diversity?

I got out of that conversation in a hurry. My only takeaway from that workshop is that I wasn’t supposed to be included in it.

Antisemitism can look a lot of ways, which is why it can be hard for people to recognize it when it’s staring them in the face. One way is to see a secular Jew, think “Hey, she’s one of the cool ones, I can say stuff to her,” and say mean things about more religious Jews. Yeah … please don’t do this. Hasidic Jews, or ultra-Orthodox Jews in general, lead very different lifestyles than I do, but they’re still my fellow Jews and I support them. Especially since they’re a much more visible target for harassment or abuse than someone like me.

Because antisemitism is hard to recognize, I think people don’t always realize how widespread it is. A few months ago, I was at an event chatting with someone who also happened to be Jewish. We started comparing notes on our childhoods, in completely different areas of New Jersey: Oh, you had pennies thrown at you? Me too. Yeah, the kids called me names too. The third person in our conversation, who wasn’t Jewish, listened with increasing astonishment. How did we have such similar experiences? She’d never heard of this sort of thing happening before. Why would children do this?

And because people don’t see this particular form of hatred, it festers and continues.

It’s a fraught time to have this conversation, given current events. But we always need to have this conversation. There will always be another reason, as Dara Horn says (read People Love Dead Jews if you haven’t already), that we need to justify our existence to people.

I started writing my middle grade manuscript—about golems, and magic, and a couple of neurodivergent kids dealing with antisemitism—around 2019. It’s been immensely frustrating watching the manuscript get more relevant every year. I would’ve preferred that it become outdated, and that my kids not have to deal with jokes about Hitler or overhear comments about how “Judaism isn’t a real religion!”

I’d rather not talk about these things. But someone has to talk about these things. Naming problems is the only way to solve them.

Thanks for listening.

***

There are various groups trying to get aid to people in Gaza and in Israel; I don’t know how successful they are right now, but it’s worth helping them. Stay well and stay safe.

Project HOPE offers training and support to health care workers and health care services around the world; it’s helping coordinate delivery of needed equipment, supplies, and services to people in Israel and Gaza

The Alliance for Middle East Peace is a coalition that works to build trust between Israelis and Palestinians; it’s creating emergency shelters, collecting donations, and offering support in other ways

The UN’s World Food Programme supplies food and vouchers to people in Gaza and the West Bank

IsraAID is the largest humanitarian aid group in Israel, according to its site, and it responds to crises worldwide; it’s helping with humanitarian activities and mental health support for Israeli evacuees

The Palestine Children’s Relief Fund has been sending food, water, and medical supplies into Gaza

Sulala Animal Rescue is the only animal rescue shelter in Gaza; it’s raising funds through Animals Australia

National Council of Jewish Women is a women- and family-centered social justice group that’s raising funds to provide basic needs, counseling, and advocacy for women and families impacted by the Hamas attack

Women Wage Peace is a women-led, nonpartisan grassroots group that advocates for a diplomatic solution to the Israeli-Palestinian conflict

World Central Kitchen is feeding displaced families in Israel and working with a local partner in Gaza to distribute meals to Palestinians

Soroka Medical Center is handling the emergency medical response in Israel

The JDC helps Jews and others in crisis around the world

Save the Children is trying to get needed supplies into Gaza

American Friends of Magen David Adom is Israel’s first aid/first responder service

United Hatzalah is a volunteer emergency medical services organization that operates across Israel

Americares is trying to assist with people’s medical and mental health needs in Israel and in Gaza

The International Committee of the Red Cross is providing medical supplies and household items to people in Gaza and trying to advocate for hostages still being held in Gaza

About MdDS

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I’ve referenced this vestibular thing I have a couple times but never gone into detail, because 1. I have a pretty mild case and 2. I hate whining. But also I think it’s a good idea to explain the disorder a little more, since most people don’t know about it. (Doctors also. Many of them don’t know about it.)

Mal de Debarquement Syndrome (MdDS or MDD, depending on which source you’re using) or disembarkment syndrome is a vestibular disorder that’s usually triggered by a period of passive motion—meaning, riding on a boat, in a plane, in a car or train. You know that feeling when you’ve been on a boat for a while, and then you get to shore and you still feel like you’re rocking on the waves? You “still have your sea legs,” as they say? Right, so imagine feeling that way all the time. That’s MdDS. Your brain can’t readjust to being on land, so your sense of balance is off.

For me—again, I have a mild case, and it’s only recently come back after several years of remission—it feels like the world is occasionally rocking around me, as though I’m on a boat, and sometimes I get a little fogbrained and tired. It was more intense in 2020, the first time I got it, apparently triggered by a plane ride and an extra-long car ride on snowy roads. That time, I felt like walking was more difficult, and the symptoms were constant. I’ve had three rounds of this so far, and each time I’ve gone from regular symptoms to maybe-every-other-day symptoms to nothing. This usually takes about six months. Right now I’m in the intermittent phase, which is good because I got there quicker than usual.

People who have severe cases, say they’re at a 9 or a 10 on the symptom scale, can’t really function at all. Some people have symptoms for years, or forever. There isn’t a cure, but there is a disability code for it. Bonus: Many people have doctors telling them it’s all in their heads. (I’m in an online support group for this. The stories people tell are awful.)

You know it’s MdDS and not vertigo or a similar disorder if you feel fine while you’re in passive motion, meaning in a car, on a plane or train, etc., and the symptoms come back once you’re back on solid ground. You also probably won’t feel dizzy or nauseous; this isn’t motion sickness. It’s the earth in perpetual motion around you.

MdDS is an official rare disease, meaning that if you think you have it, you have to explain to your doctor what it is before they can recommend treatment. (Ask me how I know!) Treatment can involve medication, usually SSRIs, or vestibular rehabilitation therapy, which is offered at some physical therapy facilities. I did vestibular rehabilitation for a few weeks in 2020, right before the whole world shut down, and I still have my list of at-home exercises to do as needed. There are also ways to manage or lessen MdDS symptoms, say by using walking sticks or canes if walking is difficult. I wear EarPlanes during flights; they’re basically earplugs that you screw into your ears during takeoffs/landings to lessen the severity of the noise and air pressure. Yes they look ridiculous, no I don’t care.

If you’re interested in learning more about it, or if you think you or someone you know has this weird thing, the MdDS Foundation offers a useful website. It’s how I realized I had MdDS in the first place. And this year’s Rare Disease Day will be marked worldwide on Feb. 29, in case you want to get involved.

The way I figure, if it’s a rare disorder that doctors don’t always recognize, then there are people who have it and don’t know what’s wrong with them. Which is why I’m writing about it. Hoping this is helpful to someone out there.