Real Life Stories of a Disabled Mom: Laying the Groundwork Never Stops When You’re Demystifying Disability for Kids

Posted by Kieran O'Brien Kern in Life After Paralysis on November 30, 2021 # Lifestyle

Kieran and her daughtersWhen I was pregnant with my oldest child, I swore that I would be extremely hands-on, in all aspects of life, like school and extracurricular activities. From guest reader to Girl Scout Leader, I would show up for her in ways my mom was never able to for me. This served two purposes in my mind, showing her regularly that her mom could and would show up for her, and two illustrating to her classmates (and by extension of their parents) that there was more beyond their narrow definition of disability.

And for a while, it worked well.

I remember coming out of my child's kindergarten class astride my Pride Victory. All the kids were lined up ready to go to class, and they all referred to me as my child's mom and made no reference to my scooter at all. You would have thought they gave me a puppy. I didn't stop smiling all day. For the first year and a half, I was the class parent, Girl Scout Leader. I was everywhere in her school experience, I knew many of the other parents from the pickup line, and while nothing was perfect, it was ok. With the emergence of COVID-19 and the lockdown, we all retreated into our homes. When she returned to school, I was home taking care of her sister. My husband handled the pickups and drop-offs. Suddenly, unbeknownst to me, my existence became shrouded in mystery to her classmates.

To be transparent, I had started working on my youngest's preschool class since I was comfortable with the groundwork I laid at the elementary level until my oldest referenced me dropping something off at her school a few weeks prior. Her class saw me scoot up to the door; I thought nothing of it as most of them knew me from school, activities, or even preschool. But one of my worst anxieties materialized before me, and my child was asked, "What is your mom riding on?" and that classic tween question, "Why is she using it?" My daughter's embarrassment hit me like an anvil falling on Wyle E. Coyote. I'll give her credit; it took a lot of guts to share that with me.

I would not have handled myself with that same clarity and ability to express myself in elementary school. Was I happy that my daughter felt safe sharing that with me? Yes. Was I also hurt? More than a little. This was in no way my child's fault, but the nemesis of even the most confident crip. . .inner ableism.

I asked her if I embarrassed her, she vehemently said I was the best mom, but that being the only kid in school with a disabled mom was hard. . .and just like that, I realized, much like I had been my own peer group in school, by nature of being my child she had become her own peer group differently. So first, I equipped her with information, "It's a scooter or a wheelchair…it is a wheelchair, and it takes me everywhere I want to go." Then I did what I do even now when faced with doubting non-disabled people; I began to illuminate my achievements (Inner Ableism Party of one!) from TV and YouTube to the Times and speaking one-on-one with students to speaking to big crowds. This seemed to make her feel better, but at the same time, making me a real person to her actual peer group is not her job. Her job is to feel good going to school and coming home. The reality of being a disabled parent is regularly reaching out to make and maintain connections; I just need to cast a wider net of connection.

I'm Kieran Bridget O'Brien Kern. Power is literally my middle name. When my husband and I became engaged, we agreed that parenthood was a two-person job. I am the primary caregiver to our children, but we all work as a team. From infancy onward, we have adapted and grown together. Every day there is a new challenge. Every new challenge is an opportunity to learn more about them and myself.

The National Paralysis Resource Center website is supported by the Administration for Community Living (ACL), U.S. Department of Health and Human Services (HHS) as part of a financial assistance award totaling $8,700,000 with 100 percent funding by ACL/HHS. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by ACL/HHS, or the U.S. Government.