“The ‘problem’ is not the person with disabilities. The problem is the way that normalcy is constructed to create the ‘problem’ of the disabled person.” Lennard J. Davis.
Let me state up front, Doctor Normal is a fine man. On first meeting Doctor Normal, who seemed amiable enough, if intense, we decided we liked him. Doctor Normal was thorough. Doctor Normal took his time. Doctor Normal followed through with requests. Doctor Normal made us feel like, in the realm of his doctoring specialty, he knew what he was talking about.
But then one day Doctor Normal used the word “normal.” Something like, Well, in a normal situation… he started, and proceeded to describe the way of most children’s bowel movements.
The therapists and healthcare workers we’ve encountered usually forego the word “normal,” since it’s laden with value judgments about how a person should be, and is opposed to “abnormal,” which implies weird, strange, bad. But Meh, I thought. Whatever. I dismissed his use of “normal,” thinking, Maybe Doc just slipped. Possibly Doctor Normal needed a little schooling on language, ableism, and disability. More likely, Doctor Normal has spent too much time in the medical paradigm that makes love to bell curves and other measurements of “normal.” For more on this matter, I highly recommend Lennard J. Davis’s “Constructing Normalcy,” but here’s a gist: You might think that “normal” is a concept cultures have always valued, but it “entered European languages fairly late in human history.” Prior to 1840, the word “normal” was a carpentry term meaning “perpendicular.” “With the concept of the norm,” Davis writes, “comes the concept of deviations or extremes. When we think of bodies, in a society where the concept of the norm is operative, then people with disabilities will be thought of as deviants.”
To the tune of First comes love, then comes marriage, it goes something like this: First comes normal, then comes abnormal, then comes an ER doctor asking, They didn’t catch it in time? after you explain your child’s genetic condition.
But Doctor Normal didn’t say anything nearly so offensive. So on this day, I just shrugged. Could I really expect a doctor to be so word-careful? Could I even expect him to be a disability advocate? I decided that I could not, and I collected my two children, who might have both been screaming and/or hungry and/or tired by this point.
Then, at another appointment, Doctor Normal looked at the sizes of my two children in the office (the oldest is two pounds lighter than the youngest) and asked me, without any pretense or awareness, How is it, having a normal child?
In the ideal world, I would have spoken up that instant. Dear Doctor, let me set your language straight. Normal is a setting on washing machine.
But here’s the thing, Dear Reader. Fiona sees nine different doctors, five therapists, and a nutritionist. Each time Fiona visits a new health care professional, I must educate. I tell Doctor X and Y and Z about Fiona’s chromosomes, about her heart, about her vertebrae, about her kidneys, about her seizures, about her weight gain, about her caloric consumption, about her past tests, about the results of those past tests, about her therapies, about her progress with those therapies, about her interests, about how those interests relate to her chromosomes, about children with chromosomes similar to hers, about issues we may see down the line, based on the experience of these children. I do all this in good spirits, energetically rattling off the list of things docs might want to know, often while dancing. Yes, I’m busting moves. I’m doing little happy jigs in the office room because this child or that child needs movement, and I’m doing this—the dancing—while saying things like, Yes, febrile seizures lasting 3 to 7 minutes [Insert upbeat side-step.] Yes, Pulmonary Valve Stenosis and Atrial Septum Defect [a.k.a., a hole in her heart) [Insert right turn, left turn.]
I’m the expert on Fiona. I understand this. And so I must educate doctors on my daughter. But, given not only the list above but the stress brought on by living that list, I don’t think I have the energy to educate Doc Normal on issues of disability, advocacy, and ableism. I don’t feel like schooling Dr. Normal on the power of language and on healthier synonyms for “normal.” (We usually go with “typical” right now. As a joke, I sometimes use “standard issue.” As in, Here is the standard issue car/child/steak dinner, and if you want a special car/child/steak dinner, you have to upgrade. In this case, Fiona is an upgrade.)
I mean to say: I just ignored Doc Normal’s use of “normal” again and I said what is true: Yes, parenting Petra is wildly different from parenting Fiona. And I chalked the whole exchange up to either A.) my over-sensitivity to the word and/or B.) Doc Normal’s oblivious but well-meaning use of it.
But then, after some talk about what Fiona cannot do (always, always their emphasis on her cannots), Doc Normal said, “I mean, she is way, way behind.”
That is when I realized that the doc’s use of “normal” wasn’t just a difference in our vocabulary usage. It reflected a different way of seeing.
Way, way behind, he said. I saw a race. Numbers on the backs and fronts of runners, all children. The able-bodied kids charging ahead, the whites of their brains all fatty and luxurious with myelin, sending and receiving impulses with standard issue speed. I saw them racing toward a finish line. I saw a ribbon fall when their chests touched it, and I saw arms raised in victory.
In the metaphor, my daughter is way, way behind. In the metaphor, my daughter is a turtle creeping along the asphalt, and no, there is no fabled “Tortoise and Hare” ending.
The metaphor makes a competition of human development, one in which my daughter is ultimately dismissed because, let’s face it, in this competition, she will never “catch up.” At a certain point, a marathon’s course shuts down. The tax dollars no longer keep it open. Traffic resumes. Night descends. The sky becomes black. The spectators and their applause go home.
There is no winning when this kind of language is applied to my daughter or anyone like her. The language highlights a way of thinking about the human body that measures the body by its output. Do, do, do. Go, go, go. No wonder new mothers sniff one another out on the playground, fretting about milestones, bragging if their kid rolls over a month earlier than books say. Fiona will not play along.
As most kids her age crawl and then walk and then run ahead of her—all of which are, yes, worthy of celebration—Fiona is sitting in the same spot. Looking around her. Picking up objects and making games that only she completely understands. She halts the racing metaphors in their tracks. She mutes the bull-horn and its announcer. She sees the finishing line ribbon and looks upward instead, and purses her lips and sniffs into the unknown. She really likes to sniff.
She does not exist in order to be a gift to us, and yet she is still a gift to us, and if we let her, this is what she teaches: fuck your races, friends.
Okay, I’m sorry. She’s not that crude. That is her mother speaking.
Forget your races, friends.
If her doctor doesn’t know this, if her doctor applies a value-structure to her care that will always demean her, I will choose another doctor. He’s not gone forever, but when given the choice, I will choose someone else. Yes, it’s that important. It’s important that as many people as possible on Fiona’s team respect who she is, how she is, without pouting their lips at her body’s refusal to fit on the bell curve.
“We don’t know what her future holds,” I said to Doctor Normal, trying to give him another chance. I said it in an open, carefree fashion, as in, For my girl, we can throw the maps out the window, Doc. As in, There is a certain liberation in this, Doc. As in, Let’s fill the bell curve with candies, make it a bowl.
But Doc still didn’t get me, because instead of offering a nice exhale, admiring my daughter, and smiling at her mystery—which would, in some way, be a method of smiling at all of humanity’s mystery—he nodded sternly and said, “That’s exactly right. We don’t know what her IQ will be.”
I recoiled a little and realized Doc Normal and I would probably never be on the same page. Only later did I reread Lennard Davis on the subject, learn how the concept of normal led to the field of statistics, which bolstered eugenics and led to the bell curve, which led to the Intelligence Quotient, on which all our kids are charted. With the mention of an IQ test, Doc Normal brought Fiona and I back into Normal’s tyranny.
Today I read these notes from my friend, Steve Kuusisto, who is imagining a better future for people with disabilities. “Teaching with the motto: ‘presume competence.’ Neurodiversity seen as human potential.”
Neurodiversity seen as human potential. Yes! My daughter’s brain is different. Medical language underscores her deficits. Delayed myelination. A brain whose impulses aren’t as fast as mine or yours. But what of her potential? What of her differences as opportunities? Ones as beautiful and as glimmering as blinking stars in the night sky? Erase the race. Drop the ribbon. Look up, Doctor Normal and Doctors X and Y and Z. Look up.