SMALL SNIPPETS • Ableism, Lessons In Awareness

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I was 26 years old when my first child was born. I knew that having a child would change our lives in the same way that all first-time parents suspect their worlds will shift without really having a clue as to how all encompassing parenthood is. What I didn’t know–wouldn’t know until years later and am still only beginning to grasp–is just how my fire-kissed first born would transmute our very beings so irrevocably that we could never again fit back into the lives we once led.

Glenn was born in the wee hours of the morning, the period of the day our more primitive ancestors would refer to as the witching hour, when everything is dark and still and civilization is lost within the realm of dreams. I pushed him into this world in a sterile hospital room with a table full of shiny metallic tools at my left foot, readily accessible to my doctor if she had need. There were two nurses–well, three if you count my mother-in-law–and my doting husband was perched at my right shoulder.

The nurse rushed him over for a quick assessment, checking his breathing and heart rate, then quickly suctioned and cleaned him before neatly bundling him in the warm receiving blankets that had been patiently awaiting his arrival. It took mere minutes, yet it felt like time had slowed as I watched the interaction with my head tilted over my left shoulder. Corey was at the nurse’s side, counting tiny fingers and toes and snapping first photos, but my view of him was blocked and I had yet to set my gaze on this tiny human I had carried within my body. Then Corey picked him up and turned towards me and time stopped.

I’m not sure if it was audible, but I remember gasping when I saw him, my breath caught within my chest. He was overwhelmingly beautiful, with clear unblemished skin that’s fairness was only accentuated by the shock of bright red hair that covered his scalp. His then steel-grey eyes peered around the room with an alertness that seemed uncanny in a newborn babe, and whether it was exhaustion, or hunger from almost 24 hours with little more than water, or an over-rush of adrenaline and dopamine, I vividly remember my first thought was that he was a changeling. There amid all of the wires and beeping monitors, surrounded by the signs and sounds of the 21st century, an age steeped in science and technology, my first thought was that of magic. That the Fae had taken my child, the ruddy-skinned, curly-haired brunette with ebony eyes that I had dreamed of for months, and replaced him with one of theirs. Yet unlike my ancestors, this imagining was not one of fear but of wonder. That I had been gifted this tiny, other-worldly being to protect.

It’s funny how silly thoughts like that stick in your mind, turning over and over in your subconscious and presenting themselves at seemingly random moments. I found myself thinking of that preposterous first impression often over the next few years. That word changeling would pop into mind when a few weeks later Dr. Fisher remarked on how bonded he already was to me, the unusual way he would just gaze transfixed into my eyes. It would float through my thoughts when he began identifying numbers and letters before his second birthday. It would reappear when we began finding words spelled out with his magnetic letters too often to be an odd coincidence in the two-year-old’s placement of them. It was only after specialist’s evaluations and hours spent within harshly lit offices where scientific terms were bandied about in ominously low tones that my mind would replace the word changeling with autistic.

I found that adopting the modern terminology didn’t shift the impression of that first meeting, though, and so like all lovers of lore I began to research changelings. When I did, I began to understand the undertones of these particular fairy tales, and it was hard not to believe that there wasn’t an element of magic in the delivery room that night. Not fairies stealing my baby, but intuition, the echoes of the past reverberating into the present.

Changelings exist in the folklore of most ancient cultures, and while the details shift the central narrative remains the same: a child was born and could range the spectrum between being weakly and disfigured, or exceedingly beautiful, they varied from being below average intelligence to possessing knowledge and abilities far beyond their years. These changeling children would either fail to thrive physically or gradually show their fae nature through unnatural temperaments, odd mannerisms and obsessive-compulsive tendencies. In all cultures the way to save the real child was to harm the changeling so that the fae would be forced to return the human. This could be done through physically beating and whipping them, burning them, dousing them in poison, drowning them or abandoning them to the elements.

Like all cultural superstitions, these changeling tales stand as mirrors into the mind of humanity, cloudy and tarnished with age but still reflecting the primitive history of eugenics, the long-running abuse of those deemed disabled and the roots of a belief that is still deeply ingrained within all of humanity, ableism.

Ableism is the belief that people with disabilities are less human and subsequently considered less valuable and therefore seen as expendable. It would be easy to vilify and demonize our superstitious fore-bearers, and the thought of condoned, even encouraged, infanticide and child abuse in any form makes it hard not to, yet I don’t think it is quite as simple as good people and bad people. I don’t think that they were any more at fault than the parents that turned their disabled children over to asylums during the period in which humanity accepted the attitude of seclusion, shuttering those with disabilities away to be institutionalized from the late 1800s to the 1970s into the 1980s, where further abuses including nightmarish treatments and mass sterilization often occurred. This mass-seclusion wasn’t done out of conscious malice, but out of the lack of resources and information on how to care for those with disabilities. Most often those institutionalized were children of impoverished parents and legislation wouldn’t expand medicare coverage to those with long-term disabilities until 1972, and the Omnibus Reconciliation Act that expanded coverage to include home health services wouldn’t be enacted until the 1980’s.

More so implicit biases that permeate societies are not done out of malice or even awareness by their very nature. An implicit bias often contradicts the conscious beliefs of an individual or group. Whether they are false belief systems about disability, or gender, or race, or class or sexual orientation these prejudices are embedded into our subconscious by the very nature of the environments we are socialized into. No one escapes them. It doesn’t matter how enlightened or aware you think you are, the only people who don’t have unseen prejudice are those with developmental disorders because they escape socialization.

While deeply permeated in a culture of ableism, it wasn’t something I ever thought about, let alone witnessed in the world or even in myself, until long after I had discovered my child was autistic. It was his occupational therapist, Angie, who awakened me to my own bias and how that belief system manifested.

It was during G’s initial evaluation to begin outpatient occupational therapy services and we were compiling a list of things he was able and not able to do, while the then two-year-old little boy who was so often lost within his own world those days was tasked with completing a series of puzzles and game-like tasks. He was sitting at a desk in front of her and I was seated in a chair slightly behind him, often reaching over as she talked to hand-over-hand prompt him to complete the requested task.

I had just answered a question about some self-care skill he hadn’t yet mastered when she pointedly responded that it was probably because he knew I would do it for him. I remember that my internal response was one of outrage, only to be tempered by the quiet realization that it was true, I often would do things for him or shelter him from environments or situations I thought he couldn’t handle rather than pushing him to master them. So I stopped. Every time I started to help him dress or complete some other skill for him I would hear her voice reminding me that I wasn’t helping him. But even then I didn’t understand how deeply that implicit bias was rooted, or the ways in which it continued to manifest.

Fast forward to the beginning of this year. Schools were tentatively reopening to in-person learning and after missing almost half-a-year of in-school services, there was no question as to whether Glenn would attend or not. He needed the services. I was scared, though–less about the virus and more because we were leaving the safety net of preschool to enter into Kindergarten and it would be a new routine and new building surrounded by educators who were unfamiliar with him.

Worse, I couldn’t enter the building. I could do nothing but drop him at the door and pray that all went well inside. After the first week, I dropped him off and walked him to the door only to realize that no one was waiting to walk him to his classroom. I was just on the verge of breaking the safety protocol and walking him in myself, outraged at the imagined disastrous outcomes that could take place from him walking himself when I heard Angie’s voice in the back of my head.

“Do you want him to be able to navigate his own path?”

“Yes,” I responded internally.

“When do you want him to start?”

“He could get lost. He isn’t verbal, he won’t be able to tell anyone where he is going. He might get scared and have a meltdown,” I justified. 

“Likely all of those things will happen, but they can handle it. If you want him to walk himself then you have to get out of his way.”

So, I did. I stepped back and watched him walk away alone. I watched for months. I watched him find his classroom and navigate new people taking temperatures and subtle shifts in routine with no more than a slight delay to figure out what was happening. And then one day, as we were walking along the sidewalk that lines the elementary school parking lot, I went to grasp his hand and with a slight but determined flick of his wrist he pushed my hand away. An unspoken assertion of both independence and parental embarrassment not uncommon between children and their parents in the schoolyard, but a moment that I never expected to have. From that day on, the way I watched him shifted. Instead of watching in fear I watched in awe and gratitude.

Gratitude to Angie, for calling out my bias and gratitude to my past self for being aware enough to hear her. Gratitude that Glenn was born in a period of time where changelings are fairy stories and the cultural norm is shifting towards inclusion. And always gratitude for him, my tiny baby who was born with the ability to change everyone around him for the better.

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