I’d heard of Rabbi Emet Tauber zt’’l before my New York trip, and very much wanted to meet him at the Trans Jews Are Here event (or elsewhere, I’m not picky). Because I didn’t know him, because our social connections remained indirect, maybe because he didn’t know either, I had no idea he was so close to death. Even though I don’t know him, R’ Emet’s death is fucking with me, emotionally. I forget sometimes that EDS is terminal, not just inconvenient and disabling. At least one of my favorite people has EDS, as does their kid; my old doctors thought i might too.

I know I’m not supposed to want a cure, or feel sad about disability, but the abundance of people like me in communities like mine is rough. How many people die young, and how many of us are suffering? The number of disabled folks at Trans Jews Are Here was both fulfilling and difficult for me. Disability and impairment rob us of productivity, not just in the shitty capitalistic way but creatively, spiritually, interpersonally, religiously. It’s at best a tax paid in money or time we could be spending elsewhere, whether due to demanding access in a world built for other people or pushing back against a body behaving poorly or both. How much time that could be spent creating trans jewish art and spaces and community is spent waiting at the pharmacy? We are suffering, and some of the best of us are dying young. How many Jewish trans folks are destined to become rabbis but can’t? How many trans disabled people are destined to become Jewish but can’t?

It’s frustrating existing in a world not built for you, and it’s lonely as hell having to build so many spaces, to put time into projects that might disappear, even just as an attendee to balance complaints and criticisms with worries about whether they'll be seen as an excuse to cancel the next one. Disability is alienating. Transness can be too, depending on where you are; same with Judaism. It is hard to be like this and find community, even temporary, even in miniature talmud retreats and friend of friend connections, in chavurahs that make a minyan maybe once a year, in I-see-you nods across a crowded shul to the other GNC mobility device user, in sitting on the sidelines with a nice lesbian couple at the yiddish socialist concert where your chevruta’s in the opening band and you were worried about there not being a place to sit but wanted so badly to go anyway.

It feels so good and beautiful and necessary to make these spaces, and it is so tiring, and much harder if you’re disabled. My favorite part of this weekend was that I didn’t have to plan it, that I was around so many trans jews and I didn’t have to pinch-hit read torah or set myself a reminder to ping the email list or see if my friend is out of the hospital or give people rides or check on the organizers. I’m burning out, and I don’t work, and I have a secure living situation, and I don’t do this full time or for a living, and if I stop, maybe the next Emet will die before he finds any of us, so I can’t stop.

I can’t stop thinking about how I don’t have the mental energy to lead two seders this year, so I won’t be doing another internet seder when the one last year made me friends and was the only one at least two people could attend and the only one more people wanted to go to.

I can’t stop thinking about the many, many, many trans jews by choice I know, so many also disabled, continuing to struggle to find a class and rabbi that doesn’t deny their existence, that doesn’t take transness or queerness or nonbinariness as a reason to reject someone, when they deserve a community that will truly bring them into the fold and love them fully as trans jews.
I can’t stop thinking about the Kaddish podcast episode about trans tahara. What happens when nonbinary Jews die? Who performs tahara? Do I need to up my observance levels and go birth stealth and be trained so there is somebody here? Can I even do that, physically? What if I die, what if my friends die, what happens?

I want the world to be better than it is, for us and for them and for future generations, and I constantly run into inaccessibility struggles for myself while trying to bring the world into a position closer to the next, tiny increments closer to wholeness, repair, moshiach. I’m holding fragments. We are all holding fragments. What now?