Tag: disability

Stuck in Egypt: The Movie Seder

Image: Battle scene, Pharaoh skewering someone. Photo by chaos7/pixabay.

Note: I first posted a version of this piece two years ago. I offer it again in case someone needs it. Please note that this approach isn’t for everyone – but in some circumstances, it can be a helpful way to observe the holiday.

Passover 2009 was a time when it seemed like we could not get a break. I don’t remember all the troubles – it’s a fog now – but I had been struggling with depression and after six years in rabbinical school, I had only part time work as a rabbi. One son had a job so scary that I couldn’t think about it. The other son was having a tough time with bipolar disorder. The previous year California voted in Prop 8, taking marriage rights away from gay men and lesbians like ourselves.

We didn’t have energy for a seder that year. Looking back, I think we were in the depths of Egypt and it was hard to even imagine a seder. I didn’t feel like going to someone else’s seder and smiling and making nice, and neither did Linda.

But we still had the commandment to observe the chag [festival.] We take these things seriously. It wasn’t OK to just ignore it, no matter how tattered we felt.

So we came up with what I remember as The Movie Seder. Purists will be horrified, but that year it was perfect for us. We had a box of matzah, we made a green salad, charoset and something basic for dinner, I think roast chicken.

At the kitchen table, we did the preliminaries: lit and blessed the candles, made kiddush, and washed without blessing. Then ate our salads and broke the matzah, moving to the living room couch. There we had more matzah, horseradish, greens, charoset and the roast chicken. We put on a recording of The Prince of Egypt and settled in to watch as we munched on the ritual food. When they got to the red sea, we broke into dessert (chocolate matzah!) We sipped wine all the way through; we had four cups, I’m sure.

And I have to tell you, while it wasn’t a proper seder, at the end we felt better. The music and the beautiful messages of the film had lifted us just a bit. Watching it together, eating together, talking about the movie reconnected us in ways I still don’t entirely understand. I just know that I rose from that seder “table” ready to trudge on through that year’s wilderness.

That seder was years ago. A lot has changed. We aren’t nearly so worried about either son. Prop 8 and DOMA are gone (good riddance) and we feel like citizens at last. I’m in a good place emotionally, and I have work I love. Linda survived cancer, again. Linda and I are finally legally married, baruch Hashem. But I think of that funny little seder with great affection: it got us through a very bad time.

When you are deep in Egypt, sometimes your seder has to be basic. If you are having a rough year of your own, don’t skip the seder. I encourage you to buy a box of matzah, a jar of horseradish, some salad greens, and a bottle of wine or grape juice. Sit with your beloved or a few good friends. Make the blessings. Put on a good Exodus film (I recommend The Prince of Egypt or The Ten Commandments) and hear one of the great stories of all time. Allow yourself to relax into the story, to inhabit it; that narrative tells us things we need to know in a difficult year.

The Haggadah teaches us that “in each generation, each person is obligated to see himself or herself [lirot et atzmo] as though he or she personally came forth from Egypt.” Part of the reason this works is that over the course of a lifetime, most of us will have an experience of our own personal Egypt. If you are in Egypt today, I wish you deliverance.

L’shanah haba’ah birushalayim!

Next year, in Jerusalem!

The Inclusion Confession

I am reposting this vidui from Zeh LeZeh, the Ruderman Family Foundation blog, by permission of the writer. There are many reasons I am proud to call Rabbi Schorr my colleague, but none more than this prayer. If you are interested in Judaism and disability issues, I strongly recommend Zeh LeZeh (For One Another) as a wonderful source of learning.   – Rabbi Adar

By: Rabbi Rebecca Schorr

The central section of the Yom Kippur liturgy is the public confession known as the “viddui.” Originally patterned after the priestly narrative of Yom Kippur in Leviticus 16, the current iteration, with its poetic catalogue of sins, is the work of our rabbinic sages, who believed that the best way to have mastery over our behaviors is to recognize, name, and internalize our wrongdoings. Only then can we hope to overcome them. Following the traditional rubric, this new viddui is meant to help us recognize, name, and internalize the many ways we continue to exclude those in our community whose abilities differ from ours.

For the sin that we have sinned before You under duress and willingly; and for the sin we have  sinned before You through the hardness of heart.

For the sin that we have sinned before You by failing to include every member of our community.

For the sin that we have sinned before You by making it difficult for those who are different to find their places in our synagogues, schools, and organizations

and for the sin that we have sinned before You for thinking that we are doing all that we can.

For all these, O God of mercy,

forgive us, pardon us, grant us atonement.

For the sin that we have sinned before You by building ramps without widening doorframes.

For the sin that we have sinned before You for dedicating seats for those with mobility difficulties without constructing accessible bathrooms.

For the sin that we have sinned before You for installing assisted hearing devices and allowing speakers who believe themselves to have loud voices to speak without using the sound system

and for the sin that we have sinned before You for believing we are being inclusive when we don’t truly include all.

For all these, O God of mercy,

forgive us, pardon us, grant us atonement.

For the sin that we have sinned before You by using words to tear down rather than build up.

For the sin that we have sinned before You by not removing words from our vocabulary that are outdated, outmoded, and unacceptable.

For the sin that we have sinned before You for standing idly by while our family, friends, neighbors, and co-workers use words like “retard” or “retarded” to describe a person or situation

and for the sin that we have sinned before You by not speaking out when these words are  bandied about by rock stars, sports figures, and pop icons.

For all these, O God of mercy,

forgive us, pardon us, grant us atonement.

For the sin that we have sinned before You for staring at the child having the public tantrum and assuming he needs better discipline.

For the sin that we have sinned before You for judging that child’s mother rather than offering her a sympathetic glance.

For the sin that we have sinned before You by accommodating those with physical limitations while not making accommodations for those with developmental limitations

and for the sin that we have sinned before You by not providing support and respite for the parents and caregivers.

For all these, O God of mercy,

forgive us, pardon us, grant us atonement.

For the sin that we have sinned before You under duress and willingly; and for the sin we have sinned before You through the hardness of heart.

For the sin that we have sinned before You turning away from those who seem different.

For the sin that we have sinned before You by putting those who seem different into categories such as “less able” and “undesirable.”

For the sin that we have sinned before You for failing to recognize a piece of You in every soul.

For ALL these, O God of mercy, forgive us, pardon us, grant us atonement.

Ordained by the Hebrew Union College-Jewish Institute of Religion, Rabbi Rebecca Einstein Schorr is a CLAL Rabbis Without Borders Fellow, a contributing author of The New Normal: Blogging Disability, and the editor of the CCAR Newsletter. Writing at her blog, This Messy Life, Rebecca finds meaning in the sacred and not-yet-sacred intersections of daily life. Engage with her on Twitter!

The End of the Zero-Sum Game

“Zero-sum game” – a game in which the sum of the winnings and losses of the various players is always zero, the losses being counted negatively. (Dictionary.com)

Lately I hear arguments about a zero-sum game:

IF we pay attention to institutional racism,

     we might miss an opportunity to deal with gun violence.

IF we focus on gun violence,

we might drop the ball on disability rights.

IF we focus on the rights of disabled people,

we might forget the violence against women and transwomen of color.

IF we focus on justice for transgender people

what about women’s rights?

IF we focus on women’s rights

what about economic justice for all?

And if we are so focused on economic justice for all

what about… surely by now you get my point:

Justice is not a zero-sum game in which I am the natural enemy of another.

Justice is when we notice that we are natural allies: the queers, the browns, the blacks, the ones on wheels, the blinds, the poors, the last in line, the fats, the funny-looking, the girls, the trans, the bis, the dispossessed of all nations, the Palestinians AND the Jews, all the people who usually get shown the back door…

Until we notice that we are all at the same door

Until we notice that we are all

One.

And on that day, we will be One

And God’s Name will be One. – Jewish Prayer Book

I don’t know exactly  how we get there, but I am determined to work for it. I am determined to see the miraculous spark of the Holy One in every single face before my own. I won’t lie down in the road to be run over, but I will do my best to lift up every other person that I can. I will deal with my fears.

Because I am really, really tired of zero-sum games.

Tzedek, Tzedek, Tirdof.

Justice, Justice, you shall pursue.

New Jewish Disability Resource Online!

Neil and Denise Jacobson and I, pausing long enough for a photo. Image by Linda Burnett.
Neil and Denise Jacobson and I, pausing long enough for a photo. Image by Linda Burnett.

What untapped resources are hidden in plain sight in your temple membership?

My friend and teacher Neil Jacobson has a bold vision for congregations. He says it so well that I am not going to try to paraphrase. Just watch: Ask Not What the Temple Can Do for People with Disabilities, Ask What People with Disabilities Can Do for the Temple. This video is as un-sappy a take on disability as you will ever experience.

It’s part of a new website co-sponsored by the Union for Reform Judaism and the Ruderman Family Foundation. The website is designed for use by Reform congregations, but it is so well done that I hope it gets broad use both within the movement and beyond it as well.

Many good Jews want to observe the mitzvot concerning blindness and deafness:

Do not curse the deaf, nor put a stumbling block before the blind, but you shall fear your God. – Leviticus 19:14

Too often these mitzvot are approached from the Dark Ages, when a cheresh (deaf person) seemed incapable of communication, and more recently, when people with disabilities were seen as objects of pity or as heroes. In fact, people with disabilities are first and foremost people with gifts to give and talents to share.  We are human beings, made b’tzelem Elohim, in the image of the Divine.

Shake off the Dark Ages! Stop wasting the gifts of members in your congregation! If you want to learn about disability, if you are part of a congregation that wants to make better use of its resources, if you want to observe the mitzvot addressed in Leviticus 19:14, check out DisabilitiesInclusion.org!

 

The Barriers In our Hearts

disabilityWhen congregations talk about becoming more accessible to people with disabilities, there’s an underlying assumption that the congregation has something to offer to the person with a disability.

There’s the usual stuff, of course: the rabbi, the religious school, somewhere to go on Yom Kippur. But if the congregation is full of people who don’t know how to be friends with a person who looks different from themselves and who don’t care to learn, what’s the point? That congregation can have all the ramps and hearing devices imaginable, but it will never be a congregational home for Jews with disabilities.

So if we want to make our congregations into places that are truly welcoming, that do not put stumbling blocks before the blind, then we have to work on our attitudes as well as our architecture. And face it, it’s easier to talk about architecture. Stairways don’t get offended when someone says they have to change; people often do.

A question for every one of us (me included) to ask ourselves periodically: among the people not like myself at my congregation, whom do I know well? By “well,” I mean: Have we ever done anything together outside of the synagogue building? Have I ever given them help, or asked for their help? Have they been invited to my home, or I to theirs? Or make it even more basic: do I greet them by name when I see them on Shabbat? Do I smile?

Often, when challenged about such a thing, we feel defensive and embarrassed: “I don’t know what to say” or “I can’t understand her speech.” If the person has a mental illness or developmental disability, or looks very different, we may feel afraid and be embarrassed to admit it. This is a good reason to reach out to clergy, to say, look, I want to be more welcoming of so-and-so, but I haven’t a clue how to talk to him, or what to say to her, or I feel scared of him.  Your rabbi can probably give you some ideas about where to start and will likely be delighted that you have asked.

(Note: as someone pointed out to me recently, there are situations where interaction itself is unwelcome, as with autism. Again, temple staff and clergy can help you figure out what’s welcome and what isn’t.)

Every person brings something unique to our communities. At my home congregation, people with disabilities include a published author, an educator, a bank vice president, a rabbi, and several other people with interesting jobs and/or life stories. People who are different from me in other ways (older, younger, have funny accents not like my funny accent, different income or education level) are also fascinating once I stretch a little to meet them. All of them bring their own gifts to give to the congregation as members. Each of them brings a lot to the table as a potential friend, too.

February is Jewish Disabilities Month. We can look at that as a month to make ourselves more aware of barriers in our synagogues and institutions. Or we can look at it as a month to make ourselves more aware of the barriers in our hearts. Either way, this is the month to remove the stumbling blocks.

First Night of Chanukah: Not What I Planned

#ChanukahBlackLivesMatterI’ve been at my desk all day, ignoring the obvious: my body is especially gimpy today. Staying at my desk was tempting because:

  1. I have a lot of work to do, most of it desk-work.
  2. At my desk, I can pretend I’m not having an arthritis flare, even though sitting for long periods will absolutely make the flare worse.
  3. I had an investment in pretending, because I wanted to go to San Francisco tonight to be part of the #BlackLivesMatter march.

Fortunately for me, I have a wise spouse, who watched me get up from my chair and said, “I wish you were not going to that march tonight. You are in no shape for it.” After some hemming and hawing, I had to admit she was right. Even on the scooter, I was not in shape to be out in the rain, in a big crowd, far from home.

Inside my head, I feel fabulous, energized, full of love and Torah after the past week of retreats and travel. In the rest of my body, I feel about 100 years old. This is just a fact of living in a body with arthritis, old injuries and a bunch of other problems.

Sometimes we have to accept things as they are, and be grateful for what is possible, rather than grumpy about what isn’t. I’m grateful for the people who love me enough to tell me when I’m over-reaching, because I often fail to notice until it’s too late.

I remind myself what Rabbi Tarfon is quoted as saying in Pirkei Avot: “It is not incumbent upon you to finish the task. However you are not free to desist from it.” We have to try, but we do not have to push past the limits of our ability. I can contribute more to #BlackLivesMatter right now by teaching and writing. That’s the fact of it.

Do you have limitations against which you chafe sometimes? How do you cope, and how do you comfort yourself?

Insight from Depression Comix

As a fellow blogger wrote, “If only it were so simple…”

Depending on the kind of mental illness and its severity, it might be like the cartoon below: feel the storm coming and hunker down. But there are other possibilities:

— Feeling the storm coming, and work frantically to batten down the hatches with the meds at hand before chaos…

— No warning, just the storm arrives, and there is nothing in the larder, no time to cancel, just SPLAT and then aftermath for a while…

— Or the storm arrives and passes…. and you wake up with your life in disarray, the house in need of Crime Scene Cleaners, your bank account empty and half your friends furious for mysterious reasons.

I know folks for whom each of those scenarios has happened. So if you have a friend with mental illness, be kind. If you are one of us, know that you aren’t alone, even if it feels like it. (And thanks, comic artist, for a great cartoon!)

Ableism in the Torah? Say it ain’t so!

Leadership and Disability: totally compatible!
Leadership and Disability: totally compatible!

 

The Lord said to Moses, “Say to Aaron: ‘For the generations to come none of your descendants who has a defect may come near to offer the food of his God. No man who has any defect may come near: no man who is blind or lame, disfigured or deformed; 1no man with a crippled foot or hand, or who is a hunchback or a dwarf, or who has any eye defect, or who has festering or running sores or damaged testicles. No descendant of Aaron the priest who has any defect is to come near to present the food offerings to the Lord. He has a defect; he must not come near to offer the food of his God. He may eat the most holy food of his God, as well as the holy food; yet because of his defect, he must not go near the curtain or approach the altar, and so desecrate my sanctuary. I am the Lord, who makes them holy.’” – Leviticus 21: 16-23

These words from parashat Emor are troubling. This is a commandment given concerning the kohanim, the priests of the Temple. It seems to say that anyone blind, lame, disfigured, or deformed is not as good as a “whole” person. It seems to say, “We won’t starve you – you have a right to live! – but we ask that you keep out of sight. You are not good enough to serve in the Temple.”

And indeed, there is a long sad history of human beings saying exactly that to family and community members who were physically or mentally different. Stay out of sight – or at least keep your disability out of sight. This attitude has also taken the form of pretending that disabled people are invisible. And sadly, these verses from the Torah seem to support the notion that the best thing we disabled folk can do is to stay out of sight.

For years, I hid my own disability when it came time to lead services, despite the fact that standing for any length of time gave me excruciating pain. I got the idea from this Torah portion that a person who was leading services should be physically perfect, and that if I needed a cane or a wheelchair to function, then I was not fit to lead a service. As a result, I was not at my best on the bimah (the raised area from which services are led.) I was fuzzy minded, clouded with pain. I mispronounced words. I forgot things. I did not give the congregation the leadership it deserved. Eventually, I decided that I should not be a congregational rabbi, because of the disability I struggled to hide.

I have changed my mind about all of it. First of all, there can be strength and beauty in the prayers of a person who sits in a chair or holds a cane. I know, because I have seen it.

Secondly, I look at the historical context of this commandment. Other ancient cultures exposed (killed) infants who were deemed defective. Even Plato says that in an ideal community, infants with defects would not be allowed to live. So anyone with a congenital disability was deemed unworthy to live: compared to that attitude, saying, “You can eat the holy food, but don’t serve at the altar” seems like a big step forward.

Third, we can look at the interpretation of the tannaim, the earliest rabbis who actually recalled a time when the Temple was standing. In Mishnah Megillah 4.7, Rav Yehudah says that a kohen with stains on his hands also may not give the priestly blessing, “because people would be inclined to stare.” If in fact the reason for keeping the kohanim with visible “defects” from the Temple service was that “people will stare” then it suggests that the problem is not in the disability, but in the reactions of the public to disabilities. Later rabbis went even further: in the Gemara, Megillah 24b, they say that if the kohen is known locally, and “people are used to him,” then there is no impediment to his participating in the service.

This clearly locates the problem with the distraction of the congregation. The kohen may not serve publicly if his disability makes it impossible for the congregation to concentrate.

In this day and time, since we know that it is wrong to discriminate against those with disabilities, this is a red herring. If I am “distracted” by someone’s race, or accent, or the wheelchair they use, it is my task to “get over it” – or more accurately, to get over myself. It is not fair, it is downright wrong, for me to say to anyone, “Don’t lead services, your disability is distracting.”

So if the literal understanding of this verse does not hold up to scrutiny, if a physical disability should no longer prevent someone from serving, what “defects” should keep one from publicly leading a service? Further on in tractate Megillah 29a:

Bar Kappara gave the following exposition: What is the meaning of the verse, “Why look ye askance, ye mountains of peaks, at the mountain which God has desired for His abode?” (Psalm 68:17)  A heavenly voice went forth and said to them: “Why do you look askance at Sinai? Ye are all full of blemishes as compared with Sinai. It is written here “with peaks” and it is written elsewhere “hunchbacked or a dwarf.” (Leviticus 21:20) R. Ashi observed: You can learn from this that if a man is arrogant, this is a blemish in him.

The Psalmist asks why the greatest mountains, with beautiful peaks, look disapprovingly at little Mt. Sinai. The heavenly voice retorts, “Why are you criticizing Sinai? You are all full of blemishes!” Bar Kappara is drawing a parallel between the beautiful tall mountains looking down at Sinai, and the beautiful human beings looking down at a hunchback or a dwarf. Indeed, says Rav Ashi, the real blemish is arrogance.

Thus while this passage appears to reek of old prejudices – and in fact it may represent an old, bad solution to the problem of ableism – further study in the Oral Torah reveals it to be something quite different. If the real blemish is arrogance, then the arrogant may not lead services – but we’ll still feed them.

I can live with that.

Image: FDR in Wheelchair, public domain

Disability Adventure, Part 3: The Art Museum

Today, Chicago was my oyster.
Today, Chicago was my oyster.

Today was incredible.

When I got the notice about the Women’s Rabbinic Network trip to the Art Institute of Chicago, my first reaction was pure joy: I have loved that museum since I was a grad student in Chicago in 1980. I spent many a happy Sunday afternoon as a student strolling down those endless rooms, hanging out with one masterpiece after another.

Then I remembered: endless rooms! vast halls! It was then that I decided I was definitely bringing the scooter to Chicago with me. I couldn’t imagine creeping along on a cane, sweating, too distracted by pain to enjoy the place: no way.

So this morning I scooted down to breakfast, and met the group in the lobby. We all strolled together from the hotel to the museum. (The sidewalks could use a little work here, Mayor Emanuel!) It was a lovely day, brisk and bright, and I felt like I owned the city.  How glorious to buzz down the sidewalk, chatting with friends!

We arrived at the new wing of the museum, which is mostly very accessible. I noticed a few things that might be difficult for some people: heavy bathroom doors, mostly, but the gallery area and the restaurant were great. The elevators were huge, and had I needed to reach a button, it would have been easy.

We looked at very recent modern art made by women artists, and our guide was great at helping us to really see the works. My only gripe was that our time with the art was short – we had a meeting with a wonderful scholar in the restaurant! But that was good too – for more about that, check out Four Cups, another entry in this blog.

After lunch, I took my own route home, stopping in the Museum Shop to buy a gift. I enjoyed the fact that I still felt so energetic, and that tucking a little package into my bag was not a problem. I felt so free.

I’m not going to bore you with days and days of blogging about this. If something interesting happens, I’ll tell you. But I think mostly this is about emerging from my personal Egypt, a narrow place of pain and self-imposed isolation. The world is bigger now, and I am free.

Image: CC Lil Rose, some rights reserved.

Disability Adventure Part 2: So Far, So Good!

scooter

 

Linda dropped me at SFO this morning, and took this photo. The good news is that when I arrived here at my hotel, I was still smiling!

Traveling with the scooter takes patience. The airline questioned me about the battery and its carrier but eventually I was cleared for travel with it. I had done my homework, gotten the proper carrier, and allowed a lot of time, so I wasn’t worried. I know that people fly with these things, and that they fly on American Airlines with them, so it was going to be OK. And really, I’m glad they are cautious about people with batteries and other such devices.

TSA was interesting. My mantra going in was “I’m in no hurry” and that seemed to be the key. They had to test everything, including my hands (!) for bomb residue, but I and the scooter passed the tests.  When I got to the gate, we had the discussion again about the battery but all was well: I was able to gate check the scooter and get to my seat.

Words cannot express how much easier this was than past experiences struggling through airports. When I went to a conference in January with my cane, I was in tiny airports and was miserable and exhausted before I even got to my destination. I was in pain all the time during the conference and frankly rather cranky much of the time as a result. I was continually mentally exhausted from pain management (or perhaps non-management.)

This was totally different. I navigated through SFO and O’Hare airports with relative ease, albeit with a few stops for discussion. I’m now at the hotel and happy to be in my room, looking forward to seeing friends tomorrow and excited about a trip to the Art Institute of Chicago.  At any rate, while I am sure there will be some awkwardnesses, this is looking to be a completely different experience.

Tomorrow: Learning with the Women’s Rabbinic Network, and the first day of convention.