Life Lived Invisible: What I Learned About Grace and Forgiveness Through My Brother Andrew.
The hot June day sank down upon us, pressing into our bodies, making our movements slow and sticky. Especially my mother who, at the time, was eight and a half months pregnant. A frantic banging on the front door interrupted everything, my life included.
As my mother answered the door, her face dropped. “Where?” she demanded. The girl pointed toward the end of our street where it disappeared into the ravine. I froze in place seeing the panic grow on my mother's face. She squeezed out breathlessly, “Stay here. Someone’s attacked Drew.”
I watched my swollen mother running down the street, her dress acting like a parachute slowing her from reaching my brother where he stood confused grasping his bike. His hearing aids, a cumbersome box strapped harness-like to the chest, were ripped out. Worse yet, three boys had spat on him covering his hair and face in a glutinous mess.
It was 1973. I was almost six and my brother, with Down Syndrome, was twelve. It was that moment I realized he was different.
Understanding he was not ‘normal’, I quickly became his young protector. I searched for those who might attack him, imagining scenarios where I would confront someone much larger than myself; like a mini-David fighting the Goliath of Ignorance. At such a young age, I was full of righteous anger. This fight was also fueled by my parents and their struggle for normalization and integration. From the start, my courageous parents refused the advice given by medical professionals to institutionalize Andrew. Instead, they brought him home to face untold struggles. They advocated tirelessly for the newborns of others who faced similar opinions from the medical establishment, visiting new parents at the bedside explaining that life wasn’t over; that Down Syndrome wasn't a death sentence. As a child, I also went on these visits, spending endless hours in hospital waiting rooms entertaining myself by playing with the sliders on cigarette vending machines.
This continued until my teenage years when suddenly I stopped tilting at windmills and understood the overwhelming suffocation of peer pressure and social acceptance. As an immature adolescent, I became flooded with shame thinking that people saw me and Drew in the same light. I was embarrassed of him. I imagined that people regarded those with disabilities as having a deep, seeping transferable stain that others would see. I was insecure and awkward denying my brother more than thrice and equal to spitting on him all over again. I hated myself.
But I slowly grew up and the late ‘90s was an era of opportunity for a newly minted University graduate. Over time, I became a stabilization expert focusing on root cause analysis and monitoring and evaluation in conflict zones. I was someone who got a dopamine hit from instability and traveled the world’s no-go zones responsible only to myself.
During these years, Drew was never far from my thoughts. Globally, I searched the places where his kind, the most Invisible of the Invisibles, might be found. Where were they and why were they so hard to see? Did it remain the same as it was in Canada during the dark 60s and 70s? Were doctors still telling women they’d given birth to “mongoloid idiots” urging locking them away and forgetting?
As I continued to ask where to find them, the responses were unsurprising. In Afghanistan and other desperate countries, they simply 'didn’t exist'. In Lebanon, Romania and other mid-income places, they were hidden away in institutions - banging heads against walls, eyes dead no longer hoping to be seen. In Chad and Mali, they remained tucked away in the home, lest someone call them demonic or shun the family. When asked, shame and embarrassment slid out in response. It struck me hard; that was me.
They wouldn’t be seen, they would remain invisible, hidden, erased from life. It was in Haiti that I witnessed the true value of an Invisible. While driving to work, I witnessed pigs consuming a tiny body lying on top of a fetid pile of communal garbage. It was a child, I believe an Invisible, the body being disposed of efficiently, quickly passing into nothingness through the gut stream of a semi-feral beast.
In time, I returned to Canada to decompress from a world where I had made little difference in terms of saving lives or solving intractable conflicts. Moreover, my brother was waiting for me. Yet unbeknownst to us there was something sinister biding its time in his body. His beautiful self was being consumed by pancreatic cancer and our time together was finite. After weeks spent trying to manage his decline at home with few health/home care resources available, he was moved into hospice. Visits became excruciating as his awareness of us and self slowly dissolved. We watched helpless as he slowly moved away from a world that had chained him to its lowly expectations.
On a last night, holding his thick, dry hands in mine, I was overtaken by shame and worthlessness. Like a rake scraping my heart, I rasped into the stiff sterile sheets a cry begging him for forgiveness; for being yet another person who had made him invisible during my younger years. I didn’t voice this aloud. I couldn’t. All I could do was choke out the words “I’m sorry” again and again pleading for grace.
And out of nothingness, Drew whispered “It’s ok, Marla. It’s ok.”
I believe in his beautiful, perfect mind he knew I desperately needed absolution for my sins against him. It was at that moment I realized that I was always forgiven.
I have to give myself grace, just as Drew did, and appreciate that these experiences have brought me to where I am today and have created the passion and empathy that is now my foundation, replacing the shame that once existed before.
