A Shabbat in Hevron

About a month and a half ago, I went to Hevron for Shabbat with a few Pardesniks to visit a fellow student’s wife’s family. His wife actually grew up in Hevron; and her parents still live there today. I was very grateful for the family’s generosity and hospitality, and for the chance they gave me to experience Hevron via something other than a quick tour. The following is my account of some of the moments that stood out for me about the weekend.

On Friday evening, we went to kabbalat Shabbat services at what they call “the Me’arah” (otherwise known as the Cave of Machpelah). It’s not really much of a cave – more of a big shrine sort of building with “graves” of matriarchs/patriarchs labeled. There are like 4 simultaneous kabbalat Shabbat minyanim there, but the one we attended seemed to be the largest and was held in this big, cavernous, freezing cold space. It was a mechitza minyan, of course – I’ve gotten used to that by now – but unlike the orthodox minyanim I tend to frequent in Jerusalem, Continue reading


The Disability Community in Israel

Most people who know me know that I am active in the field of disability rights.  While it has taken me a while to connect to a disability community here in Jerusalem, I have recently begun to do so through the Jerusalem Center for Independent Living (מרכז לחיים עצמאיים), which is located in a decently-sized, fully-accessible building near Tzomet Pat and serves, all told, approximately 1000 Jerusalemites with a wide range of disabilities.  (For those who are not familiar, the Independent Living movement began in the US in the 1970s as part of the fledgling disability rights movement.  The CIL philosophy emphasizes that people with disabilities are the experts on their own needs, and that by joining together, they can work towards goals like de-institutionalization, social acceptance, self-determination, and equal opportunity.)

As part of a mini-research project I am currently pursuing on the experiences of people with disabilities in Israel/Palestine, I decided to sit down with Henia Schwartz, the coordinator of the Center, and ask her for a general overview both of the CIL as an organization and of its place in the Israeli disability landscape.

According to Henia, Continue reading

Coercion – an inner struggle

I find that I would like to explore more intensively the question of where flexibility exists within halacha and what to do with conflict between the halachic system and my other values. This is particularly important for me right now, since I am on the brink of moving out of the bubble of Pardes and Jerusalem, and into an American Jewish community where I will have to decide what I want my practice to look like in an environment much less supportive of halachic observance.

After a year and a half at Pardes, one of my biggest complaints is that Pardes is non-coercive. I have found that I grow and reach my potential best when I have some outside pressure helping to keep me on the path toward a long-term goal, and I have become aware recently that I need to seek out such coercive environments for myself. I am working, for instance, on developing a regular davening practice, but in all honesty, it’s not easy to make myself get up an hour early for minyan, particularly when I know it’s optional. I would benefit, I think, from some coercion in developing what I think could become a deeply meaningful practice of daily prayer. Of course, one of the downsides of coercion is that it denies the person being coerced the opportunity to make independent decisions.

On the flip side, while I have become more observant during my time at Pardes, I have still reserved the right to decide for myself when not to observe halacha. I try, for instance, to take a “value-based” approach to Shabbat – that is, I keep Shabbat generally, and will not break it just because I feel like it, but if something comes up that I feel is a genuine value conflict – a political event, a friend in need – I will evaluate the situation and decide, sometimes, that Shabbat is the less important value. Therefore, I am somewhat anxious about committing myself fully to observance, and giving up this ability to toggle between value systems. At the same time, I am excited to find out what happens for me on an experiential level when I submit to halacha as an overriding value… I am still seeking to determine what chovah (halakhic obligation) means to me as a contemporary, philosophically liberal Jew.

Introducti​ng Shabbat Board!

Hey Pardes!! I’m writing to introduce the Shabbat Board, which Ben announced at Community Lunch. The idea is simple: if you are looking for a place for a Shabbat meal, or if you are hosting and are looking for more guests, just send us an email letting us know which meal you want and how many people you are/can host, and then we match people up. Brilliant, no? We had this last year at Pardes, and it was a great way to make sure people had places for shabbat and to get to know different people in our community.

The email address for the shabbat board is shabbatboard AT gmail.

I’ll send a reminder next week, since I know you are all probably busy right now thinking about THIS week’s meals. And please email in if you are hosting, not only if you’re looking – having willing hosts is what really makes this project work.

Hooray for building Pardes community and sharing meals with each other!

– The Shabbat Board Committee

Disabilities Civil Rights Movement

Below is the text of my Take 5, which will hopefully get posted soon in VIDEO format.
I’m happy to continue this conversation with anyone who would like to.

I want to talk about my own experience of disability and, in a broader sense, about the disability rights movement (which I think is a really under-recognized civil rights movement).

I guess the first thing I want to say is that I’ve struggled a lot with how to present this subject and how to talk about it, because I want this to be a personal talk about myself and my experiences, but I don’t want it to be only about me — I want to talk about broader issues in society and maybe help you think a bit differently about disability than you might have in the past.

That said, I guess I’ll start by telling you about me. If you’re curious about the medical details, I have a rare neuromuscular disorder; I was born with it, and it has affected me in pretty much the same way my whole life, with the exception that in my teens I developed some breathing issues I hadn’t had before and, as a result, a lot more fatigue.

But before I get to that, I want to touch on what it was like for me growing up. I grew up with a pretty obvious disability in a family where we never talked about disability. When I think back on it, I’m not sur e why my parents approached (or, rather, failed to approach) the subject in the way that they did, but I think that they were uncomfortable dealing with it — in the way that disability makes most people uncomfortable — and so they figured that since I seemed to be managing well enough, they could shove it under the carpet. The result, unfortunately, was that I internalized their discomfort with the subject, and of course, since I lived in a society that gave me lots of negative images about disability that I didn’t have any way to counter, I became deeply ashamed of myself. My highest goal in life was to appear “normal” (and I imagined that was possible, even though it clearly wasn’t) — for instance, in high school, I absolutely refused to use the school’s elevator, and instead I struggled on a daily basis with four flights of stairs.

Things changed for me towards the end of high school, when, long story short, I had a major health crisis (some of which had to do with my disability, and some of which was the result of incompetent medical care). It turned into a three-year-long ordeal during which I constantly felt sick and exhausted and couldn’t do much except lie in bed. Because of all this, I had to take a year off before going to college.

That was by far the most difficult, excruciating year of my life. I was completely isolated, physically miserable, unable to get doctors to listen to me or take me seriously, and had no way of knowing if I would get “better” and be able to go to college, or if I would feel the way I w as feeling for the rest of my life. Long story short, I eventually diagnosed myself after doing a lot of internet research, found a rogue doctor who would prescribe the treatment I wanted, and slowly but surely improved (though some long-term physical effects from that period remain, and I still have a lot more fatigue now than I did when I was younger). I managed to go off to college and, as you can all see, I’m now managing (somehow) to live in a foreign country.

But really, the most important thing that happened to me during that year was that I was finally forced to look disability in the face and reconceive the way I thought about it — and this is perhaps the most important part of my story, because it’s where my personal experience ties in with the points I wan t to make about the larger disability experience.

  • During that year at home, I didn’t have much to do, and I so I spent a lot of time online, and eventually I came across the online disability rights community, where I was introduced to what’s called the “social model” of disability.
  • The social model posits that disability isn’t (or isn’t only) some kind of inherent deficiency within a person, but rather, it’s created by the interaction between a person and the society that fails to properly accommodate them.
  • The social model sees disability not as an aberration from what is “normal,” but as part of the diversity of human experience.
  • The social model understands that many of the common responses to disability — pity, “there but for the grace of god go I,” the impulse to give charity (which is often connected to pity), the stereotype of the “inspirational cripple” who is lauded for miraculously “overcoming” his or her “challenge s” — are really ways in which people distance themselves from disability, and imagine people with disabilities as somehow alien to them, somehow separate and different, as opposed to full-fledged and complex members of the human community.
  • The social model also understands that these responses to disability are ways that non-disabled people avoid dealing with their own discomfort, their own fears, and their complicity in society’s oppressive treatment of the disabled.

When I encountered the social model of disability, it was like a personal liberation — like throwing off chains. I had been struggling for so long with health problems, and while I still, of course, wanted to improve my health situation, I finally realized that whatever happened to me healthwise, I was “okay.” I wasn’t doomed to some kind of miserable shadow of a life because I could no longer pretend I was able-bodied. I didn’t need to be so ashamed of myself, I could look into what assistive devices might help me without feeling like I had to prove that I could manage without them, and I could confront other people’s negative conceptions of disability head-on.

Now, of course, so-called “internalized oppression” isn’t an easy thing to shake off, and I haven’t gotten there completely, though I’ve come a long way since I was 15 or 16. If there’s one thing I want you to take away from my story, it’ s to challenge yourself to think differently about disability and human norms. If you come away from this talk feeling warm and fuzzy, if you come away thinking “oh how inspiring that Jessica has overcome so many challenges in her life!”, then I’ve done something wrong. If I had more time to speak to you today, I’d tell you more details of the disability rights struggle in the US and around the world, how people with disabilities have their lives limited every day by negative attitudes and societal oppression, and how those attitudes and that oppression all too often actually kill people. I want you to be uncomfortable. I want you to be uncomfortable in a way that spurs critical analysis and re-examination, so that you will think about how you may be unconsciously complicit in the problem, and how you can participate in the social change that needs to happen. And I say this all to you in particular because this is one of the strongest, most supportive communities I’ve ever been a part of, and I have tremendous faith in all of you, and I have faith that you can and you will actively participate in the change that needs to be made.

Thank you.

Links to Disability Activists

Here are a few links to some writing by some of my favorite disability activists:

  • This is a piece by Harriet McBryde Johnson, about her debate with Princeton philosopher Peter Singer (who believes that parents should be allowed to kill their disabled babies).
  • This is the website of Laura Hershey, another activist who passed away recently.
  • Blog of Amanda Baggs, an autistic writer and activist.
  • Website of Nick Dupree, a disability activist who has fought against Alabama Medicaid’s policy of cutting off disability services at age 21, and who continues to fight against discriminatory policies in the United States that keep people with disabilities in nursing homes when they could receive cheaper and better care (not to mention enjoy their basic right to personal freedom) living at home.

Shabbat shalom!