A parent’s love, a parent’s great fear thoughts on #BlackLivesMatter & disability

I will never forget the day unrelenting fear entered my life. It’s been almost nine years. I can still taste its metallic taste in my mouth. I can still hear the sounds that brought it on. I can still see the horror that unfolded that day and subsequent days.

I was driving my then eight year old daughter home from her orthodontist appointment. She was sitting next to me in the front seat playing quietly when, I don’t know why, I sensed something was off. I remember thinking to myself “that’s an odd sound to come out of her Nintendo DS.” I glanced sideways and saw my daughter’s face distorted as I’d never seen it before, her mouth opening and closing, her eyes turned up and staring past me. The left side of her body was twitching rhythmically.

Instinct took over. I pulled into the median, signaled left and as soon as I saw an opening, made a left turn. I parked the car and turned to tend to her. By then, the twitching had stopped but there was still much stiffness in her facial muscles and she couldn’t talk, though she tried. I got on the phone and called for help.

My daughter had just had her first epileptic seizure. She would go on to have more, some so severe that parts of her speech were affected for weeks. It would take the next three years to find the right treatment combination for her.

The only other time in my life as her mother that I felt this kind of fear was when, one day, she asked me why she was unable to find me on the street near her school? She asked why I wasn’t parked in any of the side streets. At the age of six, my daughter with Autism assumed that I waited for her outside while she was in school. After a bit of probing, my husband and I pieced together that she had left school grounds after a visit with the nurse. When she couldn’t find her way back to her new summer school classroom, she did what she thought was the next logical thing: find me outside in our car.

While I can honestly say that, over the years, we’ve found solutions to the second problem, the fears resulting from the epilepsy, no matter how well she’s done, those have never gone away. They’ve never abated. Certain sounds will bring the pit in the stomach, tightness in the chest and metallic taste in the mouth right back. Be it as it may, my fear is the same one every parent whose child has a disabling condition feels. It is justified. It is quantified. It is understandable. It is expected. It has a cause. It has names that are listed in medical books.

What of the fear that Black parents experience every waking day? What of their healthy children? What about them? How is the root cause of their fear explained to them? Their fear is no less intense than mine. Their concern for the physical and emotional welfare of their children is no less overriding than mine. What of the bodily risks every single one of these children run every time they leave the safety of their home? What of the right every single parent of every single Black child has in expecting that their loved ones return home safe and sound? If my child has Autism and epilepsy and theirs are typical and healthy, what is the explanation for the sometimes deadly conditions these children and young adults are subject to?

If a Black mother’s fears are akin to mine, then I can only conclude that white privilege, the option that certain white people consciously exercise and the condition that many whites subconsciously allow, has the same effect on their target as a disabling condition such as epilepsy.  At times, the condition is so severe that it is deadly. The only difference is that being obnoxiously white can be prevented. White privilege, even at its most severe, is completely curable and need not be deadly.

Success in society need not be conditioned upon the misery of others. Respectability need not be achieved thanks to the diminution of others. The successes of our entire nation, together, could bring far more joy, pride, and satisfaction than when at the expense of some among us. There is no scientific rule that says that success cannot be achieved without it being extracted from someone else. Society can prosper with all of its members succeeding. Success is not achieved because its mirror opposite exists.

As a parent, I came by my burden through disability. I accept it. Blackness and disability couldn’t be any more unrelated to each other. Yet whiteness, mine included, has made Blackness in America a disabling condition. White privilege hobbles Blackness. That is something that I, as a parent and fellow citizen, can never accept.

 “That men have an enormous need to debase other men—and only because they are men—is a truth which history forbids us to labor.”

James Baldwin


One thought on “A parent’s love, a parent’s great fear thoughts on #BlackLivesMatter & disability”

  1. The feeling you experienced must have been what my mother felt, when I had my seizure. From a child’s viewpoint, I experienced it differently as a stay in the hospital, the arrival of a new doctor, and new bad tasting pills that I was required to swallow to control the auras that had preceded the seizure that I could not adequately describe to anyone, and still cannot find the words for.

    When I turned 50, I remember thinking a sense of relief at having gotten to that point, and gratitude. I am especially grateful that the science has improved and that new treatments are available. My life is a series of stages defined by what medication I had been on at the time–there are trade-offs, but they options are improving. At 61, I concentrate on reducing stress.

    Your daughter’s wonderful artwork is a reminder that no one is simply a diagnosis, that we are all capable of surprising ourselves. May she continue to follow her artistic muse and see where it leads!

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