by Meriah Nichols

I really thought I knew disability. I thought I knew what it feels like to have a disability; I thought I knew how it is to navigate a world that often does not understand or appreciate the presence of disability. I thought I knew the feelings that a disability can bring with it: the hurt, the pain, the joy, and the delight. I really thought I knew it all.

I had gone through the windshield of a car when I was four years old, you see. My brain sustained injury from the impact. My face, shredded by the glass, was stitched back together in time for me to start school. The red scars laced over my face, brilliantly visible against my pale skin—quite the delight for the other children of the early 80s! Later I received my glasses with lenses so thick, they looked like they were the bottom of Coke bottles. A few years later and I was found to be profoundly deaf. Enormous hearing aids were added.

The layering of these experiences became the pavement upon which I navigated my world. Disability is an intrinsic component to who I am, affecting every element of my being in that it affects my hearing, my sight, and my very perception of the world around me. It affects how others see me, and quite literally affects how I see them.

You would think then, that having a child with Down syndrome, an intellectual disability, would be easy, right? Because I thought I understood disability, from the marrow on out.

What I did not understand is that while I understood disability, I understood my disabilities. I know what it’s like to navigate a world that speaks the “language” of the able-bodied, but I don’t understand the cultures that exist within the Disability community. The d/Deaf, Blind, and Autistic communities and the Down syndrome community each have their own culture based on shared experiences.

Even within these respective communities lies the difference held within the individual experience. My daughter is not the same as others with Down syndrome, just as I am not the same as others in the d/Deaf community, and none of us in the human family are the same as one another. We are all unique, just as all flowers, stars, leaves, and blades of grass are unique.

I thought I knew disability. I thought I knew how my daughter’s trajectory would unfold. People said all these things about “special” and “enjoying going slower.” I don’t appreciate sentiments, however well meaning, that end up feeling like they separate us from them. “Special” is one of those, as it creates a space, an “other,” but there is no other. We’re all here, we’re all ultimately one family, we’re all going through this life, aren’t we? In a similar vein, I was confounded on the mystery of this “slower” that seemed to be equated with Down syndrome and intellectual disability.

Having an intellectual disability, as I have learned through my daughter, does not equal “slower” but rather, “own pace.” “Own pace,” however, is not synonymous with slower. There are some things that she learns swiftly, and others she just does not care about and will probably never learn.

To be honest, I deeply admire that about her. I think too many people, myself included, spend far too much time in this precious, short life of ours learning things that mainstream culture tells us is important, but to what end? Is it really important to us, for us? Are these pieces of information going to enhance the quality of our life? I have seen time and again my daughter reach for what is important to her, absorb it swiftly, and move on. I’ve seen her just as swiftly reject what isn’t important to her and move on. She doesn’t spend time on what she deems useless.

Another thing that I deeply admire about my daughter is her presence in the here and now. Mindfulness is becoming a buzzword, a hot topic and key concept. My daughter was born with mindfulness: her entire being is squarely in the present, with only quick glances to the future or the past. This is a skill, and it’s one that comes naturally to her. Perhaps it’s the same or similar in others with Down syndrome? I suspect it is, but just as we would not lump everyone who is Latinx into one group because of Spanish spoken, we shouldn’t lump everyone who has Down syndrome together, simply because of their intellectual disability.

I really thought I knew disability. I thought I knew what it feels like to have a disability, but it turns out that I only knew what it felt like to have my disabilities. I thought I knew how it is to navigate a world that often does not understand or appreciate the presence of disability, but it turns out I only understand what it’s like to navigate the world with my own disabilities. I thought I knew the feelings that a disability can bring with it, but I only knew the feelings that my disabilities bring with it. My daughter’s life and the trajectory of her experience upon the platform of her intellectual disability are her own; I just appreciate being a part of it.

Meriah Nichols was raised in the Pacific and Asia, Meriah Nichols is deaf (with traumatic brain injury (TBI), post-traumatic stress disorder (PTSD)), a single parent to three children, one on the Autism spectrum, one with Down syndrome, and one typically developing. Meriah is also a career counselor, plant nerd, and professional Lego picker-upper. You can connect with her at Unpacking Disability with Meriah Nichols, https://www.meriahnichols.com