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Okay, I’ll stop rambling and get on with it.
I recently shared a piece of mine entitled “I’m in a Tunnel” in the disability community on Reddit and was personally called “gross and exploitative.”
If you haven’t read the story, it’s centered around the question, “Is there any light at the end of the tunnel?” I sometimes get asked this question when talking about my daughter Em who has Cerebral Palsy (CP).
I’ve started to become more active in online communities related to CP and disabilities more generally. I was excited about connecting with other people going through similar experiences. Not only because I think my writing would resonate with them, but also because it’s hard to fully connect with parents who have kids without a disability. We have similar struggles, even though our kids’ disabilities might be different.
Here’s the comment from Reddit:
“I don't have CP, so I'm not trying to speak over that community if they have different views than this, but I just thought I'd let you know that this is cringey af.
I'm autistic and our community frowns on parents that co-opt our identity, especially in order to gain followers, praise, or money. "Autism parents" are gross and exploitative and this post (and the one you shared) could be a post from the disgusting world of autism parents if you just switched the disabilities. If your child had an identity that didn't garner you sympathy or praise, such as being gay, trans, redheaded, or fat, you likely wouldn't shoehorn it into your own identity.”
When I read it, a knot formed in my stomach. I was taken aback and it rattled around in my head for several days. I mean, it’s fine if someone doesn’t like my writing or what I have to say—that’s inevitably going to happen when sharing my thoughts publicly. But it stung to hear that my story was perceived as “cringey” or that I might be a part of a “disgusting world” of parents who can’t separate their lives from their child’s life.
I reread my piece. It didn’t feel “cringey” to me at all. I thought, How can there be such a disconnect?
Normally, I would approach negative feedback as Elizabeth Gilbert, the author of Eat, Pray, Love and Big Magic, suggests:
But in this case, it was especially worrisome because I had shared it in a forum filled with people who have disabilities or are parents of those with disabilities. I was afraid I broached some sort of ethical line I was unaware of. The last thing I wanted was to be perceived as the toxic dad co-opting Em’s identity as a person with CP as my own.
How can Em’s CP not at least be part of my identity? Taking care of her needs is all-consuming and I’m living it every day, so I’m not sure how I can’t identify as a father of a daughter with CP to an extent. Wouldn’t it be more strange if I didn’t identify with Em’s CP at all?
I have no intention of exploiting Em for likes, followers, money, or fame. I, of course, want my writing to resonate with readers. Likes and followers are a side effect of what happens when I effectively express myself and my words resonate with the audience. If I’m coming from a place of loving Em and wanting to share and connect with others, then it’s perfectly acceptable for me to write about my experiences.
I write about my experiences to process them. It’s therapeutic to write them and cathartic to share them publicly. And it’s a creative endeavor that just feels good. There are plenty of authors who have written about their experience parenting their children. If my passion for writing and connecting with others results in money or fame, there’s nothing wrong with that.
Yet I still had a lingering doubt that I might’ve broken an unwritten rule.
I talked to my wife Allison about the comment. She was upset that it invalidated our experience as parents who have been dealt a particularly difficult hand.
“Isn’t it perfectly valid for me to share my real-life experiences about our situation?” I asked her.
“Absolutely. It’s not like you’re putting Em in the circus or something like that,” she said. “You’re writing about your perspective and your struggles. That’s your real-life experience and it’s totally okay to write about it.”
Talking with her helped, but we’re both new to the disabilities and CP communities and we aren’t plugged in to all the nuances that may or may not exist.
A couple of hours after talking with her, I received a direct message on Instagram from dystrophydad, a father and blogger named Joe. He had seen the comment and ensuing discussion and sent me this note:
“I've got muscular dystrophy, and whilst the disability community are great, many of us have complex issues when it comes to our disabilities, both in how we want to be seen and how we think others see us. You'll get antagonism as well as support, as some people seek realism while others seek comfort. Your style is your own as are your experiences.
I wish you and your daughter well with all the challenge and delight you'll find in living a life touched by disability.”
Later that same night, I connected with Larkin O’Leary, the organizer of one of the parent-focused Facebook groups and founder of Common Ground Society. I asked for her perspective since I knew she had read my “I’m in a Tunnel” piece. Her son has down syndrome and she essentially echoed what Joe said. She went on to say this:
“I share my story in hopes that people will learn! My quote is: you don’t know, what you don’t know, until you know....so let’s learn.
No one will ever understand our lives or realize our kids are JUST OUR KIDS.”
These responses were exactly what I needed to hear. And especially from two people who have been involved in the disabilities community for years. They validated that writing about my experiences is okay.
At the end of the day, I need to take what I can learn from these types of interactions and move on. While the Reddit comment was off base, it will help me be more aware of how I’m writing about Em. She’s still only two and a half years old, but it will be important to take into account how she wants to be portrayed in my writing—if she wants to be mentioned at all—as she gets older and is able to articulate her desires.
In a way, I’m glad this happened so I could look into the issue more closely and make sure I’m a helpful and productive member of the communities I’m joining. These communities none of us wanted to be a part of in the first place, but we’re glad are there for us now.
I’m proceeding as Joe said beautifully, learning to live “with all the challenge and delight you'll find in living a life touched by disability.”
Thanks so much for reading. I’d love to hear any thoughts that come to mind in the comments.
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Keep it up Lyle
I've been in the disabled community for years and I still get yelled at for some things I say. Disability cuts across all different characteristics. And there is so much baggage with disability that you'll never please everyone. I know I'm extremely crictal of other people with CP. I mean to be, but I am. For me, it's because so many people with CP have been taught that they are special that sometimes I think they need some to say "Hey you're not that special, you're just a normal person" If that makes sense. Maybe some parents are extra critical of other parents. Just a thought