Here's What I Want You To Know Before You Grieve For My Disabled Body

“Don’t look it up,” the white coat cautioned, “it will scare you.”

Their eyes glued to the floor, my doctors tried to convey the severity of pain levels, survival rates and lack of treatments for a rare disabling condition to my preteen self. Something I’d never heard of ― now what I embodied ― held the keys to unlocking what my future might contain.

My brain was a whirl of medical terminology I never knew I needed. Allodynia. Hyperalgesia. Malfunction of the nervous system. Learning the language of a rare medical condition feels like getting punched in the gut with a Latin dictionary.

That’s when the pre-grief started. Pre-grief at all the things I wouldn’t be able to do as a disabled tween. A chorus of voices chimed in: “You won’t be able to walk down the aisle,” “Aging will be hard on you,” and “You won’t live a full life” are phrases I heard regularly while learning to navigate my adolescent world in a wheelchair.

All around me, folks pre-grieved the imagined future they thought I was going to have. Pre-grief deals in “what ifs.” It asks you to live inside a future that hasn’t happened yet, one that you don’t know if you desire ― one that everyone else chooses for you. Why was anyone thinking about me traipsing to the tune of wedding bells as a preteen? Who is aging easy on? What determines a “full life” anyway?

Swirling around me, people grieved for me, for a future I hadn’t articulated or desired. Supposedly, this was done out of love, but it felt artificial and awkward to me. None of that stuff had happened yet. People still grieve for me everywhere I go. My wheelchair is the key to unlocking the floodgates of pity.

There are enough injustices for disabled people in the U.S. right now without borrowing from tomorrow’s griefs. Grieve for that.

Grieve for the system that forces disabled people into poverty by revoking services if you own more than $2,000 in assets. Grieve for the medical system bankrupting disabled people. Grieve for the disabled parents whose kids are removed by child services simply because they are disabled, a process that is currently legal in 20 states. Grieve for the fact that 70% of disabled people are unemployed in industrialized nations (and 80-90% in developing nations), and those of us who are employed can be paid as little as pennies per hour because sub-minimum wage is still legal in 41 states in the U.S. Grieve for the fact that many disabled people still don’t have marriage equality, voting access or the right to live in our own communities.

But don’t grieve for futures that haven’t happened yet, because those are the ones we still have the potential to change. Perhaps instead of grieving, folks should have collaborated to create a new world where I could flourish. Perhaps instead of wasting crocodile tears on an imagined future, they should have used their power to change that future. Disabled people don’t need your pity or your pre-grief. We don’t need you to tell us we are an inspiration simply for existing as a disabled person.

We need you to help overturn these inequitable systems. We need your allyship to implement our accommodations. We need you to learn from us when we sound the alarm that something is wrong.

Save your tears and fears for someone else. I am sick of being mourned when I am very much alive.

So it is with complicated feelings that I approach Disability Day of Mourning (March 1), a day that memorializes disabled people killed by their parents or caregivers. The day is not just about remembering those who were murdered but draws attention to the harmful ways this violence is often minimized.

People excuse violence against disabled people by casting it as understandable. They call our murderers “merciful.” They grieve for how hard it must have been to “put up with” our disabilities instead of grieving our lives.

I want to honor the disabled people who have been murdered, and I also want this grief to spark more than candle vigils and somber moments of silence one day a year.

We are still in the middle of a global pandemic that has disproportionately killed disabled people and people who are chronically ill. Every day is a fight. We fight for ventilators not to be rationed, for doctors to not assume we have a poor quality of life, for people to see us as human. We fight for CDC Director Rochelle Walensky not to interpret our potential deaths as “really encouraging news,” as she declared on ”Good Morning America.” I am tired of fighting for people to understand that we are human and barely grieve our deaths because our lives are considered tragic.

We shouldn’t have to parade our trauma ― divulging our most painful moments to strangers ― to be valued as humans. We shouldn’t have to show our scars for our pain to be real. We shouldn’t have to have to fight every day to be considered human.

As disability activist Imani Barbarin says, my disabled life is worthy. But my life is worth so much more than not wanting to die ― not wanting strangers to openly grieve my existence. My disabled life is vibrant. My disabled life is a creative force that imagines a new world where we don’t have to endure people being encouraged by my death because I was unwell to begin with.

Disabled people are oracles, Alice Wong so brilliantly reminds us. We are living in the future ― one where we don’t have to perform our trauma for it to be valid. One where disabled body-minds are not grieved, but where we are understood as inherently worthy. One where ability and wellness are not the admission price of belonging, but where all body-minds can thrive, just as we are.

If only everyone else would join us in this world.

Dr. Amy Kenny is a disabled scholar and a Shakespeare Lecturer who hates Hamlet. Her work has been featured in Teen Vogue, The Mighty, and Roxane Gay’s The Audacity. Her forthcoming book, “My Body is Not a Prayer Request,” comes out in May 2022.

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