Beautiful Discrimination: How Social Media Turned One Person's Ignorance into Another's Healing
There is a place inside my emotional being I don’t touch. It is deep in my soul and rests there like a stone. People who know me know that I am open, candid. I share myself easily and readily. But not this. This place is hidden and quiet and confusing.
Sometimes it spills out a bit, leaking sadness and guilt and tenderness into other emotions. But when I try to trace it back, to follow it to its source, I get lost. It is the third rail of my subconscious mind.
When I was two years old, my younger brother was born. He was born with Down syndrome, a disorder which causes developmental and physical delays. While Sam brings boundless joy to all of our lives, his birth and subsequent diagnosis was, and remains, painful for my parents. I cannot say whether or not my own family had a harder time than others, or how painful such a thing should be. I can only share the impact this had on me. This is the only way for others to understand why our recent Facebook experience was such a tremendous gift.
Having a brother with Down syndrome has given me some of my greatest assets and been the source of some of my strongest pain. Growing up, there was so much I wanted when it came to Sam. I wanted desperately to know the real Sam. As if, somehow, Down syndrome was only a mask, behind which my true brother existed in all his “normalcy.” I wanted other children not to stare at him, and other grown-ups not to condescend to him. I wanted to protect Sam. I wanted to understand him. I wanted to know he would grow into an independent adult. And I wanted assurance he would survive beyond 40. When I saw him in pain, I wanted him to be able to understand it and know it was only temporary. When teenagers laughed at him, I wanted Sam to react angrily rather than enjoy the attention. I wanted God to be with Sam, to envelop him and hold him and shield him. In Samuel 1:3 we read, “and the youth Samuel grew, and God was with him.” I wanted this to be true.
All this wanting. And then there was the guilt. The guilt of knowing my own future, my own basic survival, was practically guaranteed. The guilt of feeling jealous when my parents rejoiced at Sam’s very banality or worried about his existence. The guilt when I wondered if my life was enough, or if I had to be extraordinary in order to pay back the absurd gift of my intelligence. The guilt I felt when I underachieved or wasted my talents. The guilt I felt when I did succeed and was praised for gifts I inherited by sheer luck. The guilt of sadness when Sam was clearly and most often a spark of unbridled laughter and contagious happiness. But, I still wanted a guarantee that Sam was not chosen to have this over his other three siblings, that it was random. Without this guarantee, I felt I could never live up to having been spared.
I could not find a way to express my desires and my guilt. Even if I could figure out the words to illustrate the feeling, who was I to complain about Downs when Sam actually had to live with it? Who was I to mourn a living family member when my parents had to cope with the handicap of their own child?
And thus the guilt and pain lived on silently. It hardened into this solid stone, untouched and unyielding inside of me. Over the years it has become a lonely place. As public and extroverted as I try to be, this is a place I seldom share.
Which leads me to the miracle of Facebook.
To celebrate Sam’s 40th birthday, my husband and I decided to fly him out to our home in California for a vacation. As we have done many times in the past, I called the airline in order to arrange a meet and assist (so my parents could walk him right to the gate and I could pick him up there at SFO). I was stunned as the supervisor I spoke to explained that in order to accommodate Sam’s disability, we would be charged $100. As most people in my generation do, I took to Facebook, complaining about discrimination.
The conclusion of the story is that after a colleague shared my plight on her Twitter page, Virgin America not only rectified the situation, but has gone out of its way to make sure Sam’s experience is pleasant and respectful. The story was so moving, I was asked to write about it on this Reform Judaism blog. I was asked to share just how powerful social media can be during this month of February, Jewish Disabilities Awareness Month. But, this story isn’t actually the real story.
The real story? When I wrote about my brother; his handicap, subsequent needs, and my treatment at the hands of an ignorant supervisor, my secret solid rock began to leak. Sadness, an old sadness which has nothing to do with the present, steamed out and spread against my soul like fog. My simple Facebook update about bad customer service triggered my emotional third rail and left me spent and wary…and exposed. Immediately after I posted, I panicked. This lonely, private place of guilt and desire was laid bare for all my “friends” to see. Many of whom I’ve never even met. What was I thinking?
And then the responses poured in. Support, suggestions, advice, concern. And with these responses, a little light crept in, shining for a brief moment against the darkness of Alone. And it felt good.
You cannot stand with me inside this oft-hidden place. I know that. But, what I found on Facebook was that you can peer in and smile. You can wink. You can see. And by seeing, you can lighten the weight of this solid stone. You can, for moments at a time, relieve my soul of this extra heaviness. Now, that’s some powerful social media.
Rabbi Andi Berlin is the Congregational Network Director - West for the Union for Reform Judaism.