Emet Tauber: Disabled Oracle
Emet Tauber: Disabled Oracle
A different world is possible
There was always a journalist, Joshua Bright, in the room with us in those dying days, in that season of our grief & mourning. Emet had found him on Instagram, I believe. This journalist was working on a long term documentary project about grief, death, dying, and palliative care. Emet wanted to have his story documented. Even in dying, he knew how connected he was to others, and he wanted to help others learn through his journey. His commitment to his convictions gives me chills and takes my breath away sometimes. The sheer courage of his vulnerability. He knew about the power of disabled witness, of personal storytelling as a building block of organizing. In every moment he lived and embodied his values. His name, Emet, means truth in Hebrew. He embodied what it means to live authentically.
He was a grandchild of Holocaust survivors, born in Memphis. His biological father, Larry, was a closeted cross dresser. Emet was in so many ways the fulfillment & manifestation of his ancestors’ wildest dreams. He spoke with the deep wisdom of someone whose very DNA carried trauma. He knew where he stood from a historical perspective.
His biological mom, Debbie, and his adoptive mom, Naomi, were lifelong friends who had met in elementary school. Naomi has low vision, so Debbie would read things aloud to her. I feel that this initial act of relational solidarity between two Jewish girls with different disabilities infused Emet with the implicit knowledge of disability community and solidarity. Debbie had EDS (Ehlers-Danlos Syndrome), like Emet, as well as some other disabilities. She died when Emet was nine years old.
Emet was extraordinary. So much of his wisdom feels prophetic now. I am not typically a religious kind of person, but part of me truly feels that Emet was a prophet, a lamed vavnik. To become the first rabbi with EDS, right before we entered the pandemicene. The way he knew his time. How he knew who he was, so young. He came out as trans at fourteen, and was the only out queer person in his entire school. How he became himself. How he found his people in his time. He really did receive ordination by virtue of the wisdom and teaching he embodied.
Below are a few words said about Emet.
“AN OPEN LETTER TO EMET FROM THE SVARA FACULTY
Read aloud at his funeral on March 27, 2019
This past summer the SVARA Faculty welcomed Emet into the bet midrash for a week of studying ancient texts in the woods with a community of queers, radicals, and seekers. From the first day, Emet was glowing, lit up with his love of Talmud and the process of learning it. The sugya, the text we studied, with Emet over the summer centered around the question of whether someone who is sick has the personal authority to decide to eat or not eat on Yom Kippur.
The text goes through a number of historical layers, beginning with a mishna that teaches us
that if there are medical experts present, they determine whether a sick person can eat on YK, and if there are no medical experts present, the sick person can decide for himself. If Emet were here, he’d probably recite the text for you from memory. The gemara then picks up with a series of questions and discussions about the details of the mishna.
Without fully giving away the complicated journey that the gemara goes on, I want to share with you that it’s conclusion is extremely radical.
At the end of the text we hear from a later sage, Mar Bar Rav Ashi, who has thoroughly reworked the mishna, and teaches that for anyone who articulates their own needs, even if there are one hundred experts who say the opposite, we listen to this one sick person because, as it is written in the Book of Proverbs, Lev Yodea Marat Nafsho, “the heart knows the bitterness of its soul.”
In other words, each person is the truest authority of their own experience.
In class, Emet shared with us his hiddush, a new revelation and insight about the text, a reading that was so illuminating, it caused an actual audible gasp in the room when he shared it.
At the conclusion of the whole sugya, Emet taught, the ultimate authoritative voice is brought in, the voice that supersedes the Mishna, the earlier tannaitic rabbis, and the voices of medical experts. That ultimate authoritative voice is embodied in a verse of Torah, which for the rabbis is the language of God.
And, Emet pointed out to us, when God, the ultimate authority, speaks in the text, it is only to give God’s own authority away, to give it back to us. To those of us who have been marginalized and disempowered out of telling our own story, who have not been trusted to make decisions about our own bodies and our own lives, from our own self determination.
When God takes back power, for one brief moment in this text, from the rabbis and from the medical experts, the power is put into the hands of the marginalized. The ultimate image of authority places us, our hearts, and our souls, as the source of truth, knowledge, wisdom, and prophecy in our tradition.
As we learned Lev Yodea Marat Nafsho this past summer, it was Emet’s insight about how radically empowering God truly is in this text, that opened up and revealed the text for us as teachers and for the whole learning community. Emet pushed us to take seriously that each one of us could be, and should be, a source of Torah, an authority on our lived human experience, and divinely charged as such. His learning and his life embodied this radical Torah, of living your truth, and of doing so fiercely, because you know this is what God wants from you.
Most communal leaders would probably be too nervous to share with their wider communities that the core texts of Jewish tradition so deeply want those of us who have been historically disempowered to claim our strength, wisdom, and self determination.
But Emet wanted to be this kind of rabbi. The kind that leads us to the moments in Jewish tradition that uplift and reimagine what we’re capable of when we know that we can be bold, radical, and courageous, and that God has our back.
And he was this kind of rabbi.”
Read aloud at his funeral:
“And still, the isolation of those living with trauma and chronic illness is the truest evil of ableism in our society.”
“In May of 2016 he wrote in a blog post, “I am disabled, and I am DAMN PROUD. I am not in any way ashamed of my disability, nor do I think that disabled people are burdens or deserve to be marginalized…” He goes on to describe the pain and suffering associated with his progressive genetic disability and advocates, as he did in every part of his life, what the rabbis lifted up as truth. That Lev Yodea Marat Nafsho – that we are each the experts of our own lives. That only we can know what is best for ourselves.”
Read aloud at his funeral:
Rabbi Elliot Kukla:
Healing Prayer for Ableism
May the one who blessed our ancestors, heal all the parts of our society that stigmatize, oppress, exclude, and deny us life-sustaining care, as sick and disabled people.
Moses had a speech impediment and was appointed by God as the spokesperson for the enslaved Hebrew people with the help of his brother Aaron. So too, may each of us be granted the aids and access we need to be leaders.
When Miriam was sick the whole camp waited for her and stopped traveling for a week in the wilderness, until she was able to leave her tent. May our own communities surround us in our tents when we are unable to leave our homes.
Hannah cried out her pain out loud in the Temple when she was infertile and the Priestly authorities called her “mad”, but tradition remembers this moment as the birth of personal prayer. We pray that soon the day will come when all of our cries of pain are recognized as the holiest of prayers.
May the God of our ancestors bring us to a time when all of our unique strengths are celebrated, all of our diverse needs are met, and we can move together towards liberation for all.
“Preparing for the end, Tauber considered his legacy: what causes did he want to support and what kind of world would he want to help bring about? He decided to steer a substantial amount of his remaining resources to Reconstructing Judaism. He and his family made a gift of nearly $70,000 to the institution to create a new need-based scholarship fund for rabbinical students. The Tauber scholarship will make a meaningful impact in the life of the recipient. Tauber also requested that each scholarship recipient deepen their knowledge of the community of people with disabilities through study or volunteer work.
RRC (Reconstructionist Rabbinical College) student Sarah Barasch has gotten to know Tauber over the last two years. She said that, despite all his health challenges, he managed to travel to advocate on causes he cared deeply about, once Skyping into a rabbinic Hebrew class from an airplane on his way back from testifying before a state legislature about disability issues.
“He taught me a lot about what it means to work really hard and try to get as much as you can out of the time you have,” said Barasch. “He has set a really powerful example for dedication and commitment. Maybe he pushed me to envision what the rabbinate could be.”
While Barasch offered that it might sound clichéd, she couldn’t help but think that “if he could do as much with his short life as he did, I feel more inspired to do more with mine. Because of knowing Emet, the world has a lot more possibilities than I saw before.”
Read aloud at his funeral:
“Emet’s father was of a different time and place, and lived most of his life as a closet crossdresser in the south. In many ways, Larry was one of Emet’s roots and Emet fulfilled his father’s unrequited queer life.”
“Emet was a grandchild of Holocaust survivors and the child of people who survived so much trauma and suffering. And deep in your kishkes Emet, you always understood that it was better to speak remembering we were never meant to survive. One of the things I loved best about visiting you Emet, was I could count on you to be so delightfully chatty. He always had stories to tell and Torah to share. In the words of the Palestinian-American poet, Naomi Shihab-Nye, Before you know what kindness really is you must lose things. And oh did Emet know loss.”
“Emet, you never stopped trying to help people. Even in your last days, when you were raising money for your own wedding, you donated to other people’s fundraisers. Rabbi Linda and I each recounted you lying in bed screaming, so frustrated and so determined to get your power chair and hoyer lift to someone who could use it. On February 5th you posted on Facebook, “I need to get a hoyer lift from philly to Michigan (I sold it on ebay) I’ll pay you and give you a great deal. Please it’s very important to me.?????….” Your never stopped trying to help other people, to be of service. That is the kind of rabbi and person you were.”
A mutual aid network formed around Emet. It was made up predominantly of queer & trans disabled people. There were several rabbinical students and rabbis. There were a number of organizers. At any given time, there were at least five or six other Jews with EDS and/or other connective tissue disorders in the room with us. It was a real braintrust of disability and chronic illness, and in particular of EDS. It was based in interdisability community solidarity, the idea that we are connected while varying in individual experience. It was a project of repair.
One of the consequences of ableism is a belief that disabled people don’t have anything to contribute; that we are recipients of help, but not providers of it. Emet’s mutual aid network was organized autonomously by queer and trans people with a variety of different disabilities. It was a glimpse of a new and different kind of world, a vision for systems of care. We waited on no one to do it for us. We knew we were the ones we were waiting for, and we could build a new world for ourselves. It is this glimpse of a different world that has sustained me through these pandemic years. I know it is possible because I saw it. My friend is still teaching me. He taught me everything I would need to know about chronic illness, disability, and grief.
The hospice center where Emet passed away was originally founded to care for HIV/AIDS patients in a time when few hospice centers would accept them. I always visualized the queer and trans networks of care that gathered in these rooms before us. Care work is revolutionary.
Emet was a lifeline for many in online chronic illness communities, as he gathered information and resources about his illness. He knew that with underdiagnosed diseases like EDS and ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) & Long COVID, in the absence of official biomarkers, the symptom profile of patients is the biomarker- that we are bodies of knowledge.
Caring for Emet wasn’t easy, and it took every single one of us. It took him asking for what he needed, showing all of us that asking for what you need is holy. It is inviting your community into a covenant with you, a relationship elevated to the level of obligation.
For example, Sarah Barasch’s fierce love of Emet and visionary perspective made us see how much more was possible in what we could create together. Sarah was committed to ensuring Emet had what he needed, whether that meant organizing pain medication, sourcing IV Benadryl during a nationwide shortage, or organizing us to take shifts.
Emet taught us about building a world centered around disability. We always used Zoom to ensure a virtual option. We physically brought Shabbat services to him in hospice. It was a gift to have ritual leaders/facilitators who collaborated to organize services and rituals in Emet’s hospice room. This is how faith can look centered around chronic illness.
Each of us had something to give, and a way to help. We were so fortunate to have such capable, creative ritual facilitators/leaders/chaplains, (and organizers) in Zusha, Eli, Lonnie, Sarah Barasch, Sarah Brammer-Schlay, May, Rory, Sophie, Nora, and Rabbi Linda. Zusha always set an intention for us, and helped frame our time together in hospice. Eli taught us a chant that began with the words “I am a revolutionary.”
Ritual reminded us this too is holy, and sometimes prayer is a bridge to the next moment when we do not know what to do. Rituals of grief matter, and I am all the more grateful for our time together in hospice and shiva because of these plague years in which grieving rituals have been stolen from us. Ritual marks time. Judaism is a religion of time, rather than place. It is said in Jewish tradition that Shabbat is a palace in time. The sweet time we had together in hospice was a palace in time, marked and set apart by ritual.
There is a Jewish custom, shmira, to sit with and read aloud to the deceased person until the funeral. I sat shmira for Emet, and decided to read Fun Home, because it is not often one reads Fun Home in a literal funeral home. Emet also saw himself in the story of Fun Home, as a queer trans person with a closeted queer parent whom he lost at a young age. As my shift ended, I saw the Tahara team arrive. Tahara is a Jewish ritual washing and preparation of the body. I recognized many of our friends on the Tahara team, and I felt reassured that Emet was in good hands.
Emet’s energy is out in the universe now, with every sick & disabled person advocating for themselves. In these dying days. In this season of our grief.
Crip Camp was released on the first anniversary of Emet’s death, or Yahrzeit, March 25, 2020. It is said that in Jewish history there are no coincidences. I was struck by how much Camp Jened reminded me of Emet’s hospice room. Perhaps because Emet also went to summer camp growing up, at Camp Kinderland. Camp Jened was founded by a Jewish couple. We sang a lot of camp songs together in hospice.
Both Camp Jened & Emet’s hospice rooms were these places of interdisability community, disabled joy, and mutual aid, where disabled people helped each other, and saw each other.
There was a lot of joy in Emet’s hospice room. Life took place in it. There were days when Kaden, Michael, Michaela, and Rachel, Emet’s sister, visited, and we had a waxing party or painted our nails or dyed Emet’s hair, and Michael would try to teach me the Hebrew alphabet (I did learn it after all, Emet). Emet lived into his femme gender expression and inner queen, reminding us all of the femme magic of care. Emet and I sent each other pictures of fancy dresses we liked, always saying jokingly “is this too much?”
We were so fortunate to have the braintrust of EDS and connective tissue disorders: Shayn, Stacey, Bex, Nico, Gavi, and Joan, who consistently showed up for Emet, who sat together and shared wisdom about their experiences. Shayn and Gavi frequently stayed overnight with Emet.
Daniel, Mikki, Jordan, and Davi coordinated caring for Emet’s service dog, Roxie. Some of my favorite days included visiting Emet and taking Roxie for a walk around the city while Emet napped. We all had some way to help.
All of us belonged to different chapters of Emet’s life, but a community formed. Michael, who went to high school with Emet, taught me the Hebrew alphabet. One day I sat and talked with Emet’s childhood rabbi from Riverdale while Emet napped.
I decorated Emet’s hospice room with art from the art studio space at Creating Change 2019. It was art made by queer and trans souls and I thought it might bring him comfort to be surrounded by beauty and the love and joy of other queer trans people.
Judy Heumann and Denise and Neil Jacobson, who went to Camp Jened and were featured in Crip Camp, are all Jewish and children of Holocaust survivors. Emet was a grandchild of a Holocaust survivor, who passed away this year.
I think about the legacies of Holocaust survivors still playing out through the work of their children and grandchildren, and their inherited resilience. I feel this sense that the spirits of our ancestors are guiding us towards healing, justice, and right-relationship.
I am so grateful now that I can always find Emet in Jewish text. I can encounter his love of Talmud by studying it myself. I wish I could talk to him about theology on my path to the rabbinate, but I still feel like I exist in a dialogue with Emet, always thinking about what he would say about these plague days.
My partner and I started dating about six months after Emet’s death. My partner and I both have different disabilities, and we help each other. I feel connected to Emet in the nature of our interdisability solidarity.
The pandemic began soon after we started dating. We watched a lot of sci-fi shows in quarantine, like Stargate, and The Expanse. My partner is into sci-fi, and I understand why. They joke sometimes that their BAHA (Bone Anchored Hearing Aid) makes them a cyborg. Sci-fi is speculative fiction, in which we can imagine different futures, and different kinds of bodies and body modifications. We are in the middle of a mass disabling event, and our society will need to adapt to the needs of disabled and chronically ill people. A Disabled futurism allows us to be imaginative about what it could look like.
As Emet was dying, he began to lose his vision and his hearing. When he began to lose his vision, he wanted to learn Braille. When he began losing his hearing, he wanted to start learning ASL. Anyone who visited remembers the sign he made for his door, saying “new friends always welcome.” He was always looking for ways to be adaptive, and to learn from those already living with those disabilities.
It continues to feel eerie that the world began living on the timeline of illness so soon after a prophet of illness left this world. His life is part of the fabric of my being now. At Emet’s funeral, the ceremony closed with two readings:
TONY KUSHNER, FROM ANGELS IN AMERICA
“Night flight to San Francisco;
chase the moon across America.
God, it’s been years since I was on a plane.
When we hit 35,000 feet we’ll have reached the tropopause,
the great belt of calm air, as close as I’ll ever get to the ozone.
I dreamed we were there. The plane leapt the tropopause, the safe air, and attained the outer rim, the ozone, which was ragged and torn, patches of it threadbare as old cheesecloth, and that was frightening.
But I saw something that only I could see because of my astonishing ability to see such things:
Souls were rising, from the earth far below, souls of the dead, of people who had perished, from famine, from war, from the plague, and they floated up, like skydivers in reverse, limbs all akimbo, wheeling and spinning.
And the souls of these departed joined hands, clasped ankles, and formed a web, a great net of souls, and the souls were three-atom oxygen molecules of the stuff of ozone, and the outer rim absorbed them and was repaired.
Nothing’s lost forever. In this world, there’s a kind of painful progress. Longing for what we’ve left behind, and dreaming ahead.
At least I think that’s so.”
GRACE BY DENISE BENITEZ
I always knew the river was there,
but it went underground
or dried up in certain seasons,
or taunted with a deluge of rain
and then a long dry summer.
At last the season came,
my body taken by the river,
my soul in its drowning embrace.
In recognition came the words.
Here is what I know:
My cells speak to me in a secret language.
My body adores breath and benevolence.
All hearts rest in the same Great Heart.
There is nothing to fear.
In the heart of contraction, there is a magnificence
of space, a lifetime of universes.
Everything is moving sensuously.
Everything, given half a chance,
given the slightest invitation,
given the smallest opening of the fist,
is leaning toward Love.
Emet taught me what it truly means to live with chronic illness and disability, and what it means to live in dying days, in a season of grief. Emet’s hospice room offered us a lab, a portal of sorts for re-centering and re-imagining the world around disability and illness. We can utilize these pandemics as a portal. We are closing Shmita year on the Jewish calendar, in which we allow the land to lie fallow, an opportunity for a season of rest and renewal. At the close of Shmita year, we prepare seven years ahead for the next Shmita cycle. Everything is dreaming ahead, moving towards Love.
For more about Emet
Noah is an organizer and Jewish educator. Noah has been teaching at Jewish Children’s Folkshul for four years and is currently working on their masters in Judaism and Human Rights at Gratz College, with the goal of pursuing rabbinical school. Noah’s writing has been featured in Jewish Currents, New Voices, The Jewish Daily Forward, Jewschool, and Lilith Magazine. Their writing about Judaism and disability can be found here. Their patreon can be found here: https://www.patreon.com/DisabilityTorah and also on their linktree. Find them on Twitter @NoahTzedek.
Pictures by Shayn Pulley
Art made by queer and trans people of the Creating Change 2019 art studio space
Decorating by Noah
Support Disability Media and Culture
DONATE to the Disability Visibility Project®
Leave a Reply