Coral’s diagnosis is a tragedy. My daughter cannot be disabled. What will her life be like? What will our lives be like? How will she live if she can’t talk or walk? It seems like it will be very hard for her life to be joyful. All of the doctors were sad when they delivered the diagnosis. Disability is sad. I usually feel badly for people I see who are disabled. None of the parenting books talk about this side of parenting. The pictures of happy moms with their babies don’t show disabled babies. This is not how it’s “supposed” to be.
That’s a little bit of the story that ran through my head after I received Coral’s diagnosis of Dup15q at 3 weeks old. The story went on and on, as I repeated parts and added new thoughts, worries and fears. The story also held different stories—one about disability and another about parenting a disabled child. It’s hard for me to recognize that story now, but it was the story I told myself (through many tears and an incredible number of emotions) at the time.
In the beginning, it seemed like society’s story about disability came at me from every direction—medical professionals, other parents of disabled kids, teachers, community members, friends and family, and myself. Everyone wanted to try to “fix” the situation, to reassure me with more stories. Many stories went like this: “My cousin’s friend’s daughter had a lot of delays. They didn’t think she’d walk or talk. She does both now and is doing great.” The consistent message appeared to say that things will be okay because Coral will develop skills. It wasn’t that things will be okay because Coral is Coral, regardless of the skills or level of independence she achieves. The focus on the prior message (rather than the latter) often left me apprehensive in conversations. I wanted to ask: And if she doesn’t do those things, what then? Will things not be okay? Will her life be less valuable?
Eventually Coral came home from the NICU, and we started to live our life as a family. It didn’t take long for me to start to question many parts of the story I told myself about disability and parenting a disabled child. As I’d look at Coral smiling, giggling or playing in her own way, I started to feel like the story wasn’t all adding up. These days I see how each of her sensory regulating movements—jumping, shaking her head back and forth, spinning—have deep purpose for her. In the swimming pool she embodies pure content, as her body moves naturally in the water. She truly is My Coral Fish. When she plays with her music toys and hums her favorite songs with perfect pitch, her joy radiates. At school drop off I love watching each of her classmates show up as themselves—jumping, running (some towards and others away from the school gates), clapping or using an adaptive stroller. One by one these experiences have become part of my lived experience of being Coral’s mom.
My lived experience is separate from Coral’s lived experience of being disabled. That is an experience I do not know, but by watching Coral and listening to Coral I can get a glimpse into her world. I can also learn more about disability by listening to and spending time with other disabled people. Doing these things helps me to adjust my perspective and to check the story I tell myself about disability.
Before Coral was born, I lived a life with non-disabled friends and family. Growing up, I did not interact with many disabled kids. They weren’t in my school classes, my church classes or on my sports’ teams. As an adult, I watched from afar as parents dropped their kids off for the special education class, and I made huge assumptions about what it must mean to have a disabled child.
And that’s when it started to sink in. Society’s story about disability and parenting a disabled child is not based on lived experience. It is a story, created by non-disabled people, with a collection of outside perceptions that creates a stubborn and harmful bias.
Of course, my lived experience of being Coral’s mom includes other moments too—epilepsy, medical tests, sensory meltdowns, IEP meetings, paperwork (so much paperwork), adjusting family plans when events and locations are not accessible to Coral, watching Coral with a consistently high level of vigilance to keep her safe and so many other things. However, I now see that the whole of my parenting experience (like life) is one of suffering and joy. The two can’t be separated.
These lived experiences help me generate space around the original story I told myself about parenting a disabled child (and all its accompanying feelings of grief, anger, constant comparison to “neurotypical” and resentment). With space, I can look deeply at my bias—its source, its underlying story and how it manifests in my life.
Seeing my own bias is an ongoing, day to day process that will last my entire lifetime. In the past I have reacted to my own bias by reprimanding myself: How can you think THAT? Now, I take a gentler approach where I name the bias while recognizing that I am not the bias itself, though it is a thought I need to pay attention to.
I now recognize my bias in several of the fears I have around Coral’s life (and my own as her mother). As I sat in the NICU with Coral after her diagnosis (with the story in my head running wild), I wondered whether Coral would be better off with a different family. I questioned my ability to provide her with everything I thought she might need, given my beliefs about disability at the time.
Bias is also present in my motivation behind certain actions. Almost immediately after I received Coral’s diagnosis, I jumped into action—researching best strategies to help Coral and setting up as much therapy as possible. At therapy, goals were set. In the early years, as much as I wanted Coral to achieve certain things for her own independence and development, I now recognize that I also desperately wanted her to achieve milestones so she would more closely resemble the expectation I had for Coral from pregnancy (a non-disabled child).
Bias presents itself in my assumptions about what Coral may or may not understand. In the first years of Coral’s life, I partook in many conversations in front of Coral under the (wrong) presumption that just because she could not say the words being spoken in front of her that she could also not understand what was being said.
Additionally, bias appears in my expectations on outings and at events. At the Safari Park, Coral enjoys walking back and forth, while rubbing her hand on the hand railing. She rarely looks directly at the animals (like I might expect her to using my neurotypical expectations as a frame). In the past, my thoughts might say: I’m not sure why I bring her here. She doesn’t even pay attention to the animals anyways.
I also recognize bias in my language when speaking about disability. I used to use terms like special needs and now choose to better align with the preferred language of the disability community (as I talk about in Yes, I Call my Child Disabled).
The more closely I look and the more time I take to sit quietly with my thoughts, the more clearly I can see my bias. I realize that when bias is present I am often not presuming competence but am instead making large, generalized assumptions about what Coral does or does not understand based on whether or not she demonstrates that understanding to me in the way I expect.
Engaging in this daily practice of looking deeply at my thoughts and my bias has transformed the way I parent Coral (and all my kids). It helps me identify bias in others, not in a judgmental way, but rather in a way that gives me the space I need to be free from those same thoughts—ones that don’t align with my lived experience about being Coral’s mom. I am better at not carrying other people’s discomfort related to disability.
I feel that this has also helped me to give Coral more space to be who she is, free from a constant background pressure to continue to check off goals and meet milestones. I now see the value and importance in prioritizing play, recreation time and the development of her friendships.
If I continue to feed the story society tells about disability and live without trying to recognize my own bias, I will be adding to the heavy weight of the collective bias that already sits upon Coral’s shoulders. Everything I may feel that I’m doing to help Coral live her best life (therapy to help Coral achieve more independence, medical choices for a better quality of life) will be in the shadow of what society believes about Coral and the extent to which their bias allows her to access her authentic life. Additionally, my own bias will creep into every decision I make for Coral, creating a self-fed circle where I will be unconsciously limiting her opportunities in life.
Once Coral left the hospital, I went into a “do” mode. I felt like the more I did—arranging therapies, medical appointments and services—the better things would be for Coral. While things like therapy have certainly played an important role in Coral’s life, I now see my perspective taking a big shift from doing to being.
By spending more time in stillness through meditation and prayer, with less doing, I can be so many more things. Be more present. Be more mindful. Be more compassionate. Be more patient. Be more grateful. Be more full of faith.
I can be more aware of the stories I tell myself and the bias inherent in those stories. And that’s who I want to be, not only as a mother but as a human being, too.