I am a different person since Coral stopped breathing at home at three days old.
Before, I was the mother of a typically developing two-year old boy. If I saw a child with profound disabilities, I was a mom who may whisper softly, “Oh, I couldn’t imagine. I don’t think I could do that.” I was often unsure of what to say or how to act in certain situations involving disability.
I was a mom who had a privilege that I didn’t even know existed- the privilege of parenting a typical child in a society that expects and accepts this type of parenting, including the conveniences, the access to activities, and the freedoms that are associated with it. I had the privilege of knowing that my neurotypical son would be seen as equal, his life viewed as valuable, and his place and purpose in society never questioned.
I did not recognize my privilege, and I was part of the problem.
In 1990, Congress passed the Americans with Disabilities Act. This was the first comprehensive civil rights law for people with disabilities. It gives similar rights to those with disabilities as the Civil Rights Act of 1964 did based on race, religion, or sex.
It also came 26 years after the Civil Rights Act of 1964.
This bill was the result of years of hard work by many disability rights advocates who believed that all people deserved equality, regardless of their abilities or disabilities. At the heart of the disability rights movement is a desire for society to see a person with disabilities- not for her disabilities, not even for her abilities, but for her person, her potential, and her equal place in society.
It is my belief that our society struggles with achieving these goals because we are unable to see the person instead of the disability. We look at people, but we fail to actually see.
Shortly after Coral’s diagnosis, I began to do a few things to help replace my routine and stereotyped words, thoughts and actions with mindfulness.
1. I am mindful of my words.
I often hear expectant mothers or fathers say, “We don’t care if it’s a boy or girl, just as long as it’s healthy.”
“As long as it’s healthy…” Before Coral was born on the other side of this phrase, there were times I used these words. Recently, I stopped myself as the words were about to roll off of my tongue, realizing I was about to say words that I do not believe to be true. In the past, I’m not sure I ever really thought about the words and their connotation. I was not purposefully trying to be hurtful to anyone, but I was also not being mindful. If I had truly believed these words when I used them, Coral probably would never have been born.
“As long as it’s healthy,” implies that health is the only thing that matters. It isn’t. When I used these words I was contributing to society’s collective dialog about disability, adding to a larger perception of disability as something that is, in one way or another, less and not as valuable.
Less than healthy is somehow less.
Health is certainly a blessing for which there is no substitute. As a mother to both a typically developing and currently “healthy” son and a daughter with special needs and medical challenges, I give thanks everyday for my son’s health. However, my son’s life is not inherently more valuable than my daughter’s life because he is healthy. Health is not what gives a life value.
Now that I walk with Coral on the other side of these words, I realize that mindfulness in speech is critical to creating equality for people with disabilities. The words I use are heard by people who are walking all different paths, including parents whose kids were not born “perfectly healthy,” those whose children became sick or had an accident, and people of ALL ages who live with disabilities. I wonder what message this phrase and other words (including derogatory and purposefully hateful words) send to this minority group. And I wonder how changing our words has the ability to change a lot more.
2. I am mindful of my thoughts.
Awhile back the Dup15q Alliance reached out to me about speaking to a pregnant mom who had received a diagnosis of dup15q for her baby in utero. She wanted to speak with someone who had a baby with dup15q. I agreed.
I never heard from the mom.
I don’t know what happened. Maybe she got too busy to talk, maybe she was too overcome with emotion, or maybe she decided to have an abortion. Regardless of the reason, I pass no judgment. I do not know her unique situation.
Nonetheless, I do wonder about her and her baby from time to time. And it got me thinking about the delicate interconnected nature of prenatal genetic testing, abortion, and society’s subconscious views of disability.
This is separate from a pro-life or pro-choice debate; this is not a statement as to whether or not a woman should have the right to choose an abortion. Rather, it is about the dialog that surrounds unexpected results of genetic testing- the stereotypes, the perceptions, and in many cases the misinformation that often creates the foundation of conversations between friends, family, and doctors surrounding a prenatal diagnosis of a disability- and how that dialog can form the basis for the decision as to whether or not to have an abortion.
What we as a society think about the life of a baby, who is presumed to be disabled before birth, is undoubtedly connected to how we view the lives of those living with disabilities after birth.
There is a lot of fear surrounding a diagnosis connected with a disability of some sort. In the days and weeks that followed Coral’s diagnosis of dup15q at 3 weeks old, I was overcome by fear. I was so afraid of raising a child with a disability that I actually doubted my ability to be Coral’s mom. I even contemplated adoption.
Fear is powerful. It almost stripped me of my baby girl.
My fear was based on my perception of disability, a perception that came from a collective story our society tells about disability; this story is weaved together by our societal values, reinforced stereotypes, and parental expectations and the accompanying parental ego that are formed by both of those things.
Equality for those with disabilities cannot exist in a society where fear of disability is not only present but is prevalent.
Thoughts precipitate every word and action. If there will ever be total equality for those living with disabilities, it needs to start with mindfulness of thought. So, now I pay close attention to how I feel and what I think when I encounter a baby, child, or adult with a disability.
Am I afraid? Am I judging the person? Do I have low expectations for her? Do I truly believe that she is equal?
Do I feel pity because I have chosen to compare both her abilities and the way she interprets the world to an arbitrary set of standards that I feel determines the value of life? Do I feel pity because I think that I know what her life is like, and it must be not as “good” as mine? Or do I feel pity regarding her quality of life because I am judging her life based on the types of disabilities or medical challenges that I feel I could or could not live with in my own life?
3. I am mindful of my actions.
Because Coral was born with dup15q syndrome, my three-year-old son has many more opportunities to interact with kids with disabilities. Coral is part of an early intervention program. The program holds a bi-annual dinner for all families. At one dinner, Tate ran over to a boy who was playing with a ball. As he got closer, he hesitated for a second, looking closely at the boy. I could tell that he noticed something was different; the boy had Treacher Collins syndrome, which is characterized by craniofacial differences. But his hesitation lasted no more than a second before he joined fully into playing with the boy and the ball, like any two kids would play.
Tate did not have labels to apply to this boy. He was a boy playing with a ball, and Tate wanted to play, too. Simple.
Before Coral was born, I was awkward in certain situations involving disability. I didn’t want to stare, so I ignored or avoided eye contact. I didn’t want people to think I doubted their abilities, so sometimes I thought it best not to offer any help. Neurodiversity made me uncomfortable.
I complicated interactions that could have been simple.
In becoming more mindful of my actions, I started to be like Tate- to forget labels and to stop being awkward. I began to look each person in the eye. When I look deeply into someone’s eyes, I find that I give myself a chance to see the person. I connect with them on a human note. I see life. I see love. I see ability. I see value. I see an equal.
Sharing this sort of moment with someone has a tremendous power to change our preconceived notions about disability, our stereotypes, and our fear into love. Replacing inaction with mindful, positive action is a path toward equality for those with disabilities.
Disability is a part of human life. We cannot protect against life- either the unexpected happenings or the passage into old age. For this reason, we run the risk of devaluing our own lives or the lives of our loved ones by seeing those with disabilities as anything less than equal.
Today I recognize my own able-bodied privilege. That privilege should not be used to dehumanize the most vulnerable in our society, to strip them of rights and access to resources, but rather it should be used to embrace them, to learn from them, and to become a more empathetic society in the process. Those who are disabled do not need sentiments of pity. Feeling pity is a way of avoiding discomfort and excusing inaction. Instead, they need love, recognition, and to feel valued. They need the world to be more mindful.
As I watch Coral “cruise” along the couch, taking big purposeful steps to get to her toy, I see fierce determination coupled with a strong spirit. Some might say she is her mother’s daughter. I actually think that the opposite is true: I am my daughter’s mother. Coral is helping me to become the mother I need to be for her- one who mindfully sees when she looks at someone and one who realizes that true equality for Coral actually begins with my own self-awareness and self-change.