Flipping it Upside Down: A Parent with a Disability Parenting an Able-Bodied Child

“Mommy, you should go to school and learn to drive so that we can go get smoothies.”

“Mommy, I will buy you glasses just like daddy’s.”

“Mommy, you have eyes just like Cookie Monster.”

Hi everyone! I’m Kim: a mom, wife, technology project coordinator, and lover of allergy free baking who just so happens to be visually impaired. I have been visually impaired for all of my memorable life. I have a primary vision condition known as retinopathy of prematurity, which is the main cause of my blindness and a result of my premature birth, with other complications such as ocular hypertension and nystagmus. To give context and faces to these conditions, Stevie Wonder is blind due to retinopathy, Ray Charles had ocular hypertension (glaucoma), and I believe Cookie Monster most likely has nystagmus (it is where your eyes shake involuntarily).

I became a mom 4.5 years ago to a smart, sweet, and beautiful little girl named Harper. My husband was always meant to be a dad and I always believed that I couldn’t be a mom if I could not provide flexible mobility and play environments for my children. My life is heavily scheduled and organized as to minimize what I always thought was putting a burden on others; and therefore, I entered parenthood with a lot of anxiety. There are some basic things that fully sighted people can do that I cannot: driving, playing with small toys, reading typical print size books, and being safely outside once the sun starts to set without the need for a guide. When my husband and I learned we would become parents, my head was filled with questions and concerns like “how would I eventually take her to soccer practice?” “I’ll

never be able to pick her up from school.” “What if I need to get to the doctor and my husband isn’t home?” “She and I will never have things that are just ours outside our home.” “I cannot see these toys she loves.” These were questions, concerns, and my own internalized ableism that I wrestled with silently and only brought up to my husband after the first time I called an Uber to get our daughter to the pediatrician after a clear allergic reaction. But after telling my husband what I was thinking and feeling, he told me that he LOVES driving, playing with LEGOs (a toy I cannot see), that us doing activities as a family was never a burden, and that as her dad he wanted to be at all doctor’s appointment because it is his child.

Now at 4.5 years old, my daughter is very aware of my vision. I opened this post with things she has said to me. Obviously, she is a child. None of these things came out of her mouth with any malicious intent. She is curious and observant but also is not versed well in ophthalmology. Even without malicious intent, these innocent words of a child can still hurt (well except the one about Cookie Monster. He’s adorable and I do also love cookies). These words do not hurt because I’m being presented with cruelty, they hurt because they are observations of my previously mentioned anxieties. However, when my daughter recognizes some of the limitations I face as an adult living with low vision, I have always tried

to be honest with her. She now knows that there are better books for me to read to her at night, that she and I make vegan baked goods every weekend because it is “our thing”, that daddy’s glasses are not the right solution for me, and that we may not be able to drive to the smoothie place but we can walk to the coffee shop in our neighborhood for allergy free muffins and La Croix (and maybe an iced latte for me). I do still worry about the day when she has friends who bring up my vision. I do not want her to every be ashamed or embarrassed of an aspect of my life I cannot change, especially because she will

have so many other valid reasons to be embarrassed of me. But I find that being as honest with my child as I can be and meeting her at her level breeds compassion for the day where I am not the only person in her life who happens to have a disability or when she is being confronted as to why her mom is different from other moms. I think teaching her how to ask questions in ways that are kind, recognizing boundaries of others, and that being silent when cruelty is expressed to those different from her is never acceptable are things that she will have ingrained into her life from the beginning. I try to remind myself that by living my life, and loving my child as fiercely as I can, I can give her first hand experience in being an advocate for the diverse and beautiful world around her. So, if you are parent who has a

disability and raising able bodied or neurotypical children, please remember that your existence in their lives can teach them so much more than what you think they are missing out on.

-Kim Browne-

Follow Kim on Instagram @rockthekasb