The other day I was having a conversation with a mom whose child has a developmental disability. He was recently diagnosed with autism, and she was in the early stages of trying to make sense of his diagnosis and understand the reality that would be her life from now on. She shared with me how she felt the moment that the therapist who evaluated her son brought up autism. Her and her husband both felt like it was a punch in the gut, like this diagnosis meant that something was wrong with their young son. I first want to acknowledge and hold space for these kind of feelings. I remember when I first received that call when I was still pregnant with Ana. The genetics counselor left a message on my voicemail that I didn’t happen to check until a Saturday. Just hearing those words, “Hello, this is John calling from the Genetics Department at Kaiser. We’re calling to let you know that you will need to come in for another ultrasound, we found something abnormal in your images and we would like to take a second look.” My heart immediately sank. I remember sitting there on the couch with my husband at the time. He noticed my face and asked what was wrong. I told him what the message had said. He tried to calm me down and assure me that it was probably nothing, it was probably just a mistake. I knew though. I had that sinking feeling and I remember articulating out loud. “No. There’s something wrong with her. ”
That was a little over three years ago. Looking back on that moment now, I realize that my choice of words was not ideal. However, it makes sense why that was my first reaction, and why most of our first reactions to our children being diagnosed with disabilities is to think that something is “wrong” with them. Our society has conditioned us to believe that there is a standard, a baseline, a status quo, a “normal” and that everything that differs from that norm is somehow less than, imperfect, or incomplete. We are conditioned to believe this from a very young age. Take a second look at the advertising that surrounds us everyday. Most advertisements feature young, attractive, white, straight, able-bodied individuals. Some companies have made big strides in recent years to try and change this, (I’m looking at you Target) but for the most part our advertising gives us a very narrow image of what is considered “normal”. The word “disability” in and of itself implies something negative. The prefix dis means “apart,” “asunder,” “away,” “utterly,” or having a privative, negative, or reversing force. I didn’t know what privative meant, so I looked that up too. The definition of privative is “marked by the absence, removal, or loss of some quality or attribute that is normally present”. It’s no wonder why we all have such a negative view of disabilities, the word itself implies incompleteness. Language and advertising, coupled with the way that the people around us talked about or acted toward difference when we were growing up, really sets the stage for how we think and talk about difference and disability.
As I got to talking with this mom, we both remembered that growing up we were taught not to stare and not to talk about kids with differences. We were taught through implicit messages that people with disabilities were to be pitied, that we should be kind to them, and to never make fun of them, but pity doesn’t leave much room for any real connection. When we found out that our children were going to have differences, at first both of us thought about all the negative things that would come with that. But over time, and through experience, I have learned to shift my narrative, and I want to help shift yours too.
One of the things this mom told me was that after her son’s diagnosis, her family and friends said things like, “it’s not a big deal,” and “the doctors are wrong, they just want to diagnose kids”. After Ana’s diagnosis I remember people also reassuring me that it wouldn’t be a big deal and that the doctors would probably be able to “fix” her spine. I can understand the impulse to say things like this in an effort to quell someone’s discomfort in a difficult time, but at the same time we have to interrogate the beliefs behind these kinds of appeasements. At the root of these statements is the belief that any type of difference or disability is inherently bad or undesirable. This belief is rooted in ableism. According to the Center for Disability Rights, “ableism is a set of beliefs or practices that devalue and discriminate against people with physical, intellectual, or psychiatric disabilities and often rests on the assumption that disabled people need to be ‘fixed’ in one form or the other” (Smith). Although we might not see the above statements as discriminatory, they certainly rest on the assumption that people with disabilities need to be fixed, or that there is something wrong with them.
As I sat and talked with this mom, it reminded me of the concept of intersectionality, something we had talked about often in previous conversations. Intersectionality refers to the interconnected nature of social categorizations such as race, class, gender and ability as they apply to a given individual or group. Growing up as a mixed race female who presents as white, I have spent a lot of time thinking about the categories of race and gender, how they intersect and inform my experience of the world. As I grew and matured, I came to understand race and gender as a part of my identity as an individual, and came to see it as an integral part of others identities too. Depending on our intersections, and where and how we grew up, some of us were taught to see our identity markers as positives, some of us were taught to see them as negatives, and others of us weren’t aware that they existed (this is mostly true of those individuals who belong to dominant groups). Before I had a child with a disability, I hadn’t spent much time thinking about how ability fit into this equation, because I belonged to the privileged able-bodied dominant group; afterward, I developed a whole new perspective.
What if disability was just another integral, important and valued part of our identity? What if we viewed disability the same way we view race and gender, as a part of the individuals identity, inseparable from them, something that shapes their world view and experience, and also something that creates a diversity in our population that should be celebrated and shared with others.
In this country we used to view certain races and genders as inferior. Things definitely aren’t perfect in this area, but we have made a lot of progress toward inclusion. I would argue that certain intersections are still relegated to the margins of society more than others, and one of those populations are individuals with disabilities. How do we change the narrative? How do we create a society in which individuals with disabilities are seen as an integral part of our culture and communities, whose differences should be celebrated and embraced as a part of their identity, not shunned, changed or fixed? What if we were so comfortable with disability that we didn’t have to look away every time we saw someone in a wheelchair or someone with a developmental difference? What if we approached them and said hi, started a conversation, danced with them at a party, sat next to them at lunch, asked them how they are doing, or what they are most passionate about? I want to challenge all my readers to try something a little different this week. Read a story to your kids about difference, start up a conversation with someone who is different from you and encourage your children to do the same.
Here is a link to a website with a ton of books about difference. Read these with your own children, your nieces, nephews or your students! https://www.mrsdscorner.com/60disabilitybooksforkids/