A Different Spirit
by Kochav Yehudis
Printer-frienldy version of the text
On March 12th, 1990, grassroots organization ADAPT led over 500 protestors of varying disability (physical and mental) in the Capitol Crawl. This literal crawl up the 83 steps of the U.S. Capital in Washington DC, along with years of campaigning, led to the passage of the Americans with Disabilities Act. It has been not-quite-forty years since then, and much like the Israelites the disabled community has been a continued crawl through the desert of disability advocacy. To paraphrase activist Anita Cameron, the ADA was meant to be the floor, not the ceiling. Unfortunately, for many it seemed like the end of the road, not the start of a long struggle.
Numbers 14:29 “In this very wilderness shall your carcasses drop…Your children who, you said, would be carried off - these will I allow to enter; they shall know the land that you have rejected. But your carcasses shall drop in this wilderness. While your children roam the wilderness for forty years suffering for your faithlessness, until the last of your carcasses is down in the wilderness…In this very wilderness they shall die to the last man.”
I’m a late diagnosed autistic. I’m also a lesbian who was late coming out of the closet. I very much identify with Nick Walker’s framework of neuroqueer for this and other reasons. What that means is I spent my entire childhood knowing something was different about me, and never knowing what. My spirit was somehow different from my peers, and everyone around me seemed to know it. Unaware of my disabled reality, I never received an autism assessment in early development, and never accessed any of the accommodations that might have helped me thrive during K-12 and university education.
This has been a blessing and a curse; as noted above, it didn’t make me feel more “normal” - a feeling I’m no longer particularly interested in. However I was spared the personal experience of a broader pain many autistic people face; my parents never mourned a child who was still there.
Numbers 13:31 - 32 “...it is stronger than we…The country that we traversed and scouted is one that devours its settlers.”
It’s not uncommon for people who have never experienced disability to find the concept insurmountable. Disgaybled YouTuber Jessica Kellgren-Fozard lives with POTS and EDS, is nearly blind in one eye, and is deaf. She sometimes uses crutches or a wheelchair for mobility. Especially when using hyper-visible mobility aids, she’s on the receiving end of uninvited comments from strangers and acquaintances alike about the supposed contrast of her age, beauty, and disability, up to and including variations on “If I was disabled I think I would kill myself.”
Numbera 14:1 - 2 “The whole community broke into loud cries, and the people wept that night. ‘If only we had died in the land of Egypt,’ the whole community shouted… ‘or if only we might die in this wilderness.’”
This is, sadly, not an uncommon experience. Disability is the only marginalized identity anyone can join at any time. If we are blessed to live long enough, most of us will become disabled in some way. And disability often does, in a way, end one life and begin another.
If I had been diagnosed as a child, and my parents had had the almost cliched response of feeling as though their child was dead, they would not have been alone in that. At least one infamous autism “advocacy” organization has been known to characterize an autism diagnosis as exactly this; a death, something ruinous and insurmountable. While I didn’t have this weight put directly on me by my family as a child, I certainly grew up - knowing I was different, not knowing how, knowing I struggled, not knowing why - in the soil of a culture steeped in ableism. Disability, to this culture, is insurmountable.
I see in the Israelites’ cries to die in the wilderness a desire for things to never change. This same desire echoes through a society that makes no room for a disabled way of life. It is a kind of death in the wilderness to refuse to accept that disabled people can and do live rich lives, even if to achieve that life we face down formidable foes. Usually ours are less mystical than Anakites and Nephilim. There is struggle in a disabled life, yes. But there is beauty too, if we are imbued with a spirit ready to find it.
Numbers 14:24“...But my servant Caleb, because he was imbued with a different spirit…him I will bring into the land he entered, and his offspring shall hold it as a possession.”
Ancestry can be literal. My grandparents are my ancestors. My parents will be some day. Ancestors can be metaphorical too; All of the queer and disabled people who have come before me, who fought and continue to fight for our liberation. In the case of disability, of facing down the seemingly insurmountable odds, the giants of a world built to exclude at best and destroy at worst, we can choose who we descend from. Those who would rather face death, or those “imbued with a different spirit” like Caleb.
On March 12th, 1990, staring up the Capitol steps, ADAPT and those with them were Calebs. When my time comes I hope I will be too. I hope to look on the frightening foes in a place that does not welcome me and see beyond it all. I pray I will be moved by the spirit I have always known was “different” and do my part to fight for an accessible future where no one is conquered, no wilderness promises death, and there are no steps to be crawled up.
A promised land of milk and honey that spirits of all kinds can call home.
Kochav Yehudis (she/her) I am an autistic Ashkenazi lesbian deeply invested in multidisciplinary work, multireligious ritual, theater (and other) artistry, homemaking, storytelling, and cultural research, seeking the path of the Hebrew Priestess. My dream and calling is to connect people to the most honest story of themselves through artistry, scholarship, and ritual. I believe deeply in the body as a source of the Divine and want to open access to that embodied connectivity for others. As a settler, I hope, pray, and fight for Indigenous sovereignty from Palestine to Turtle Island and beyond. I am driven in this and all of my work by the Jewish concept of tikkun olam; I perceive the world is broken, I perceive the world is beautiful, and I commit to sacred repair. I believe great change starts closest to the heart. I live out my values in a sacred multi-religious partnership with my wife Olivia.
