My Daughter Has an Intellectual Disability. Should I Be Allowed to Write Her Story?

By Catherine Shields

“I’m gonna write a story about you.”

My thirty-year old daughter, Jessica, says this in her sing-song voice. It almost sounds like a taunt. I look up from the sink to see her flash a smile. It’s seven a.m. on a Sunday morning. Yesterday I picked her up at the group home for our weekend visit and tonight, she’ll go back. I am unwilling to admit it, but I have already started the countdown to the end of this day. For a moment, my impatience subsides.

Jessica gives a snort of laughter. She thinks she’s being funny and wants me to laugh, but I’m irritated and not amused. I’m still annoyed with her because she got up in the middle of the night and refused to go back to sleep. As I look at her face, I can tell by the way her mouth sags that she is overtired, but I can also tell she’s awaiting my response.

“Oh yeah?” I ask. Tiny soap bubbles drip off my hand as I playfully wag a finger in her direction. “How are you going to do that?”

Alia, my oldest daughter, sits beside Jessica at the kitchen table, sipping coffee. “You want to write a story because Mom is writing one about you? Jessica, you should totally do it. I’ll help you.”

Although I appreciate Alia’s support, sometimes I wonder whether she purposely eggs her sister on. Jessica nods her head up and down like a wind-up toy. She likes this idea.

“Mom, you hear that?” Alia opens her laptop. “I’m going to help Jessica write a book about you. Jessica, what should we say?”

The side door cracks open and Sarah, Jessica’s twin sister, enters and throws her backpack on the counter. Alia tells her about the book idea. Sarah sits down beside Jessica and asks her what she’d like to say.

Jessica’s blue eyes crinkle and she twists her fingers together. “Alia, do it.”

“But what would you like to say about Mom?”

Jessica tips her head. “I don’t know.”

“Mom?” Sarah is looking over Alia’s shoulder, studying the screen and reading the words Alia has already typed. “You asked both of us, but did you ask Jessica if you had her permission to write your book?”

I don’t blame the girls for asking.

“Of course, I did. She said yes.” Are my other two kids suggesting I’ve done something wrong? I begin over-explaining how every time I’ve asked Jessica if it’s okay, she said “yes,” but I leave out the part about how her “yes” is always quick and emphatic. A small part of me wonders if she truly understands the question. A birth injury caused severe developmental delays. She has the intellectual capacity of a very young child.

When I asked my girls if they were okay with me writing about them, about my experience raising them, Alia, the oldest, joked it would be her only path to fame. I offered to change their names and she insisted on keeping hers. She quipped, “I want to be able to Google myself.”

Sarah mulled the question over with more care but came back with a yes. She wanted me to tell our story, to let the rest of the world see what it’s like to live in a world with diversity.

Their questions about Jessica remind me of an editor I once butted heads with. She identified as a person with a disability, and she insisted it was unethical for me to write a book about my daughter. She admonished me for assuming I could share my daughter’s story. She argued that she wouldn’t want her mother writing about her and that her experience was hers alone.

It’s a question every memoirist must ask—Do I own this story? Is it solely mine? Or do my stories also belong to my family, to the other people, even strangers, who weave in and out of my life, or to a rude, old lady shooting me dirty looks when Jessica threw the tantrum in Burger King? My life has been so shaped by being Jessica’s mother. How can I tell my story without that?

I understood the editor’s concerns. She wanted me to give my daughter control over her own life. And I’ve done that. I fought for Jessica to be heard by doctors, by teachers, and by the group home staff. I screamed at the emergency room nurse who asked if Jessica could even answer questions, but that nurse had refused to listen when my daughter responded. I have spent Jessica’s whole life learning her signs and signals. I can see when she’s tired, scared, or overwhelmed. I know I am not Jessica’s voice, but I can be her amplifier.

I wonder about the story Jessica would write, the experiences she’d share.

I’ve reasoned that if all three kids are okay with my decision to pen my story, I have no cause for concern. I would never try to write from Jessica’s point of view because I can’t know that. But I can write about being her mom.

When we’re on our way back to the group home, Jessica returns to the idea of writing her story about me. Again, I ask her what she wants to write. I think I’m fine with whatever she has to say.

Without missing a beat, she blurts, “I love you.”

I drop Jessica off at her group home. It’s a quick exchange, because like ripping the band aid off a healed cut, there’s still always the tiniest moment of pain. And then I’m in the car, alone with my thoughts. I can’t stop wondering if I have done enough, until I tamp down the self-doubt and remind myself to listen to Jessica’s story.

The sum of all the parts.

I love you.

The End.

___

Catherine (Cathy) Shields writes about parenting, disabilities, and self-discovery. In her debut memoir, The Shape of Normal, Cathy explores the truths and lies parents tell themselves. Her writing has appeared in NBC Today. Newsweek, Bacopa Literary Review, Grown and Flown, Brevity Blog, Mother Magazine, U Revolution, Kaleidoscope, Write City Magazine, and The Manifest-Station. Cathy resides in Miami, Florida, with her husband, to whom she’s been married forever. They enjoy taking long bike rides and kayaking in Biscayne Bay. Follow her on Instagram.