A Nonverbal, Primal and Instinctual Love

By Sarah L. 5/11/25

My family has been facing adversity for the past 17 years since before this current administration. I was born disabled, however, developed more disabilities since pregnancy and birth, due to violence upon my queer and disabled body and violence upon my disabled children. I have not received justice for anything that has happened to me and my children since then, though I have dedicated YEARS of time and resources to creating an online blog about it. My struggles with illness, disability, and caregiving as a "broken mother" is also the source of much of my art and creative writing. I am waiting to see how the developing political landscape will unfold and affect my family beyond the harms we have already been suffering.

I am significantly more disabled than my spouse, which means they have had to care for me when I faced medical emergencies. Although we are a queer family (in all senses of that word) we still are placed within those rigid husband/wife gender roles, especially when viewed from the outside by traditionally Jewish people. Society doesn't expect a "husband" to stay married to a disabled and sick "wife". I'm defective, "broken", returnable-- not to my spouse of 18 years, but to the society that pities my spouse on account of the "burden" that is beared (in 2015 I created a large scale artwork that is titled "The Burden", and is about exactly this). Society refuses to acknowledge the importance a disabled mother has in their children's lives and the contributions they make on an hour-to-hour, day-to-day basis. Society can't even comprehend that true motherhood exists beyond gender, that maternal love is, in fact, genderless. Being a creatrix/creator means there is burn out. Even the Abrahamic God has to rest from creating and maintaining the existence of those creations. 

My queerness intersects with my disability insomuch as some of my disabilities and health problems have been caused by acts of hate upon my body and mind because of my queerness. It didn't matter how I dressed or how I talked; there were times when those who hated me just knew what I was, even if I wasn't allowing them to see it. These days, I lean into my queerness and disabilities as both a repellent and a magnet. I can draw to me the people I want around me, and repel those I'd rather not interact with. That can be risky however, so I learned how to assess the situation before doing so. Navigating the outside world without a community or friendships has been especially hard. I'm always operating in fight or flight mode. I'm a deer living alongside a freeway, and I have to take my chances when bounding across the road in search of water and food. My family is  also a Jewish one, and although we are not Zionists or religious, we are not generally welcome into liberal spaces. Having to raise my disabled children without a support network is harrowing. There are times where my spouse is struggling with their autoimmune disease and I must step up and care for their body in addition to my own and my children's. We take turns with this, now. We have no relief but ourselves. We must depend on each other to survive. If one of us falls--- we all fall.

There are many ways Lansing can support disabled parents. If you have events open to the public, please consider access needs for disabled people especially if these disabled people have children and families. I barely can participate in anything because I can't physically get into anywhere that's doing anything worthwhile. Organize things to do for us that don't require money. Include us in organizing community events-- ask for our advice or opinions, make us welcome in your local facebook groups and don't block us out or silence us when we are respectfully correcting ableist/ racist/ sexist/ transphobic comments. Also, please would someone collaborate with any one or few or multiple of us disabled Lansing area disabled parents on creating a support group for parents and caregivers who ARE disabled? 

I wish more people understood that disability isn’t the same for every disabled person, and that anyone can become disabled at any time, and that disability still exists in a body and mind even if that body and mind doesn't choose to acknowledge it. Imani Barbarin, Crutches and Spice, taught me that last bit. When I heard her talking about disability as it exists for people who don't acknowledge or accept it, I thought immediately of my deceased sister who died because she couldn't accept her newly disabled body. I thought of my deceased mother who was an epileptic with chronic illness and how my big sister vowed to never be "weak" like her. My mother was INCREDIBLY strong. Part of how I can navigate this time is by calling on all my memories of my mother and how she cared for my sick and disabled body. She taught me her medicine and her disability life hacks. There is beauty and strength in the experience of disability, not just the sadness. I think the sadness and loneliness comes from the projection that gets put on me, more than my disabilities themselves. It hurts to be isolated, excluded, and harmed.

Resistance for me looks like continuing to be myself---to not change anything about the fundamentals of who I am just because I am afraid. Sure, I may change my clothing or my hair if my immediate safety depends on it, but I am so much more than my appearance. I resist by strengthening my ethics, not weakening them. I resist by continuing to learn although I am tired, sore, and hurt. I commit to pacing myself, and resting when I need to, so I can continue to do the work. What brings me joy in caregiving is knowing that I am engaging in the act of love-- nonverbal love, primal love, instinctual love, and that I am part of a chain, a genetic tradition of caretaking as my maternal line were all healers and involved in care work, and the very Earth itself is a caretaker. I'm connected to the earth by way of this very powerful act.