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Jem Zero / @jemzero

Co-Caregiving

Being the role of the caregiver for one another

by Jem Zero

At 3:30 AM, my wife helps me crawl out of bed and hobble to the bathroom. She supports me when I sit down and walks me back to bed. I sway and whimper from the pain, so she massages CBD balm onto my problem areas and rubs my back until I fall asleep.

At 7:30 AM, I help my wife crawl out of bed and hobble to the bathroom. We need to shower, which we always do together, in case one of us falls. Afterwards, she helps me apply more moisturizer, and I help her shave and brush her hair.

Many caregiver narratives feature a neurotypical or non-disabled person caring for one or more disabled persons. It makes sense! A caregiver who—barring an accident--won’t be hit with their effortful moments is a reliable necessity for many disabled people.

Couples consisting of two disabled people often have a different relationship with the caregiver dynamic.

My wife, Tora, and I are a gay trans couple with both physical and neurological disabilities. Sharing our lives isn’t as simple one taking care of the other—we instead mutually assess individual and shared immediate needs. Who is the caregiver at a given moment, and for how long, is an exercise in balance; it isn’t ever equal, but we make the decisions out of love and understanding, not an obligation.

Who is the caregiver at a given moment, and for how long, is an exercise in balance.

Disabled people can often be viewed as burdens by many corners of society. I have a bad habit of “reading the comments” on controversial posts, and I’ll never forget the one that referred to a disabled assault survivor as a “fat crippled parasite.” Dr. Phil infamously claimed that relationships with a caregiver always fail, and eugenicists believe we’re better off dead.

It’s important in our marriage, for Tora and myself, to never make the other feel as if they’re a burden. Sure, we ask each other to step up more in one area or another, the best we can, but communication and effort in a relationship are far different from a disabled person being made to believe they’re a burden to their caregiver.

Tora is not a burden to me, nor does she make me feel like an inconvenience. Contrary to negative assumptions, it’s a more nourishing mindset than expecting two non-disabled people to put in an equal half of the work, all the time.

An average day for Tora and me starts with her getting my morning medication. One of us might have to help the other sit up, or get out of bed. I do my hygiene ritual and encourage Tora to work up to hers. I might eat, or jump into cooking lunch for the family. After eating, Tora cleans up. We go our separate ways to do daily work and reconvene for dinner.

Often, I take charge of metering out household activities. Tora finds it challenging to sort tasks, which overwhelms her. I don’t mind taking initiative in these cases, because Tora takes initiative in other ways. She makes sure I am on track with my medicine, that I don’t lose things, and tries her best to keep me from forgetting important dates, times, or obligations.

Even though our tasks aren’t the same, we value each other’s labor and accept what we both bring to the table.

It’s important in our marriage, for Tora and myself, to never make the other feel as if they’re a burden.

My marriage is full of love. It’s rich, cozy, and intimate. Our union is peace and understanding. Tumultuous misunderstandings and disagreements. Frustration, sympathy, and empathy. Everything that can be good despite the challenges. The marriage doesn’t suffer disability any more than someone else’s marriage might suffer from one person not liking to do dishes. You find ways to balance; you make it work.

At our wedding, we did a sand pouring ritual. Tora and I each had different colored sand, and we poured them into the same receptacle to symbolize the joining of our lives. The thing about that is, the layers aren’t perfectly flat, interspersed in regular intervals, with clear divisions between colors. 

No… Rather, there are tiers, unique and individual. Some areas have more of one color than the other, others blend to form a new color entirely. That’s how we approach co-caregiving, knowing that in the end, we’re both filling the same well.

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