Mikhail Nilov

Do Not Ask Me To Attend Your Living Child’s Funeral

I’m losing track of the number of funerals I’ve been asked to attend for living children. My eldest child is disabled, and when in the lobby of their preschool a couple years ago, I’d often find myself in conversations with parents who said they were ‘mourning’ the diagnosis of their child—usually a diagnosis of autism.

“It’s okay to grieve your child’s autism diagnosis. It doesn’t make me a bad parent—it makes me human.” They would say almost verbatim. I’d seen this quote on Pinterest, too.

“But they’re right there.” I’d gesture to their child who would be running around in circles less than six feet away.

They would then proceed to list all the things that had essentially died along with the child they had hoped for. Their child only enjoyed eating sticky rice, so no more going out to restaurants. Their child liked lining up their blocks, so there goes becoming a doctor. And at five years old, their child was ‘still nonverbal’.

“They may not be able to use their voice to communicate with you, but I can assure you they feel your resentment and disappointment toward them,” I would say. ‘Kids are resilient’ is another Pinterest quote that can die in a fire.

When a child comes out to their family as transgender, they often ask to be referred to with a different name and/or pronouns. I’ve known of one parent who refused to do this and would misgender their child, using their birth name when commenting on their pictures on Facebook, all while the child’s friends and other family members had agreed to change their language. While being transgender and disabled are not the same thing, refusing to accept your child for who they are is not just you ‘being human’, it’s you being ableist. Repeatedly and deliberately misgendering someone has been equated to violence, as many teenagers have died by suicide after their families refused to accept them for who they were. 

Parents will continue to argue with me that they have the right to mourn that their child is autistic or intellectually disabled, and I will always ask them why. Because now you can’t have a spa day with matching manicures, or because now your child won’t make it to the NBA? Who is this really about? Transgender kids will come and tell you that how they were born is not the way they actually exist in this world; while your disabled child, who may also be nonspeaking, defies the way you want them to exist, simply by EXISTING! Is your disabled child being alive really a reason to grieve? 

There are countless blog posts and books written by parents “grieving” their living, disabled child, and reluctantly coming to terms (but not really) with the life they hadn’t planned for. We don’t tolerate transphobic parents, or homophobic parents so why do we tolerate ableist ones?