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

May 11, 2023 § 29 Comments

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.

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

  • When the stories of two individuals are so intertwined, as
    a mother and her child’s, it is impossible to separate them. In the end, you will tell the same story as Jessica would: I love you. And it will be beautiful, Cathy.

  • Anne Gammon says:

    Thank you for sharing this, Cathy. I write about my daughter born with life-threatening heart defects and a multitude of other issues. As you eloquently said, “my life has been shaped by being … mom.” She’s aware of my writing and permits it. But I haven’t submitted any of her stories because I want to wait until she’s emotionally able to handle what she may read. I’m lucky to have that luxury of time. And I’m lucky to have stories like yours to prop me up when I question my own ethics.

  • camilla sanderson says:

    Thank you Catherine, for writing about this topic we all wrestle with when writing about loved ones. One of my favorite aspects of writing personal essay and memoir, is how it opens up a space for potential healing.

    The truth of my own experience is that if I share my work with my loved ones before I publish it – both about challenging experiences and pleasurable ones – and I approach it from the perspective that they have consultation but not approval, there is an opportunity for honest compassionate conversation, which has led to healing between me and my loved ones. This happened between me and my father before he died last year, which I write about here:

  • We own our own experiences. How we share when those experiences inevitably intersect with others’ is an open question. Biography and memoir and autobiography—the stories of lives are never isolated from the people we know, who care about us, and for whom we care most deeply. It is an obligation to pursue a reasonable and accurate story. We can only do our best and accept that once in a while with the best of intentions, we will fail to be fair or comprehensive.

    Others who see no need to even try to present an objective and loving story will write their biased and twisted accounts, without recognizing this or caring.

    Clearly, you care.

    • Thanks so much for this comment! It has been interesting exploring the answer to the questions I posed and it’s the reason I wrote this essay. When my memoir debuts in November, I want it to serve as a valuable resource for those who seek stories about parenting, especially parenting a child with a disability.

  • annebbecker says:

    Such a beautiful piece about a very challenging problem. I have never resolved it for myself. I wrote a memoir about my struggles rearing ourvery behaviorally son, adopted at birth. He gave permission several times, but his older sister does not want to be included. She says I have no right to publish the story. Out of respect for her I have done nothing for four years. I hope someday she will change her mind. Meanwhile I am almost finished with another memoir which doesn’t deal much with family. It has it own issues though. My first published memoir led to some thorny exchanges with my family of origin. I think though that you are right about love, and you should go ahead and publish this.

    • Thank you for your comment. Fortunately, I have the support of my family as I prepare for my book debut. I expect some of the people who appear in my story will recognize themselves and might disagree with the description of a scene or situation. I did experience this when I published a previous essay! It showed me how each one of us perceives the past in vastly different ways.

  • This is a tricky one! Is a developmentally challenged daughter able to give a mother a rationally informed permission to write about her? Maybe. Maybe not. I say do it then decide if you can or want to publish it. But perhaps your book should not be not a memoir, but a nonfiction exploration that includes nterviews with other mothers who have had the same issue, and tells how they dealt with it, and invokes your own experience too. You could bring in the opinions and ideas of experts. This approach would stand a better chance of publication snd probably get you an advance.

    • Thanks for your comment! It’s too late to change anything, since Vine Leaves Press has targeted my memoir to debut in November, with presales in August!

      • You could do the more informational book afterwards. Vine is a hybrid publisher which means that you pay to have them publish you. Right? You could get an agent and an advance from a regular publisherr if you wete willing to follow with a diffetent kind of book.

    • Thanks for your comment! It’s too late to change anything!

  • Lynn Haraldson says:

    Thank you for this. I’ve been struggling with writing an essay about being my brother’s power of attorney since he suffered a brain injury. I want to stay focused on my perspective and not wander into his personal story, but I haven’t found that “line” yet. Maybe I never will. What I do know is that writing about it has been cathartic. I hope you find the same thing as you finish your memoir.

  • Elizabeth Hayes says:

    XOXO – I look forward to your book.

  • Fred Shields says:

    You must publish this memoir. It is filled to the brim with love and insight. You have told a wonderful story and it would be a travesty to keep it under wrap. Please don’t let any comments dissuade you. Your family is so proud of you. I can’t wait to see the final copy!

  • Thank you for your support Karen! It means so much to me.

  • nelsonchochi973 says:

    You are a great mother to Jessica and I know she loves you… Keep being who you are to her and that is A MOTHER

  • Cathy, this is a lovely and touching piece. It resonates with me on two levels. First, I am the mother of an adult daughter with severe congenital birth defects, including missing a portion of her brain (the corpus callosum). Additionally, I am a nonfiction editor and writing coach who specializes in memoir. I must address the issue of “ownership” with my clients all the time. But I question myself and my effectiveness as a mom every day. I think I’m handling both roles well.

    • Thanks for commenting! I understand your feelings but it sounds like you’ve got this! Many times I’ve wanted to rail against the unfairness of having a forever kid who will always need my help, but I don’t have much choice do I? And my memoir was born from this challenge.

  • Allison says:

    I appreciate this conversation but as an adult with physical disabilities I think it’s important to remember that there is a power dynamic at play here. It’s not the same — and should not be compared to — writing about a family member who can tell her own story. Yes, maybe your mom might get mad if you publish a memoir about your complicated relationship — but she also has the capability to write her own story, and furthermore, apart from being a woman, she is not otherwise already marginalized by society.

    Writers delving into this complex topic should also do the work to put the story in the context of disability theory and disability justice.

    We have a lot of stories, both in books and on blogs, from parents who want to write about what it means to raise and be in relationship with their disabled child. Because of privilege and other factors we don’t yet have as many stories from disabled adults (although I would recommend books by Rebekah Taussig, Alice Wong, Jan Grue, Carly Findlay, Ariel Henly, and Rita Lehrer, among others) who want to tell their side of the story. Until there are more stories being published by disabled adults to offer their perspective, I think this topic must be handled with the utmost nuance and care.

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