by Kate Welch
Last week one of the American presidential hopefuls publicly mocked Serge F. Kovaleski, a New York Times reporter who, despite a diagnosis of arthrogryposis which restricts his joint function, has made a career at one of the top newspapers in the world. I’m not a fan of anything this presidential hopeful says. I find him racist, misogynistic, arrogant, and worst, of all, uninformed. This latest action upset me deeply, on behalf of the reporter and all of the other disabled people in the world.
It’s taken me a few days to examine this latest buffoonish action. It’s taken me a few days to build up my heart’s suit of armor to watch the endless video clips of the exchange. And then it took much longer for the emotions to settle into a concept I could share.
From the day my precious son Caleb was born in 1996, there have been whispers. There have been curious stares. There have been unasked questions in people’s eyes about whether, perhaps, I caused my child’s disability. In the case of 22Q Deletion Syndrome, neither I nor his father caused the genetic blip. But I have come to believe that even if we had, it wouldn’t make a difference. Parents of a child with any disability don’t need any more emotional garbage than we already heap upon ourselves.
As a young child in the 1970s, I remember very few instances where I saw anyone with a disability out in public. There was a little boy in a drug store who I unforgivingly followed from aisle to aisle, trying to figure out what made him different. There was a classmate whose brother had autism—she rarely had friends over because, well, just because. There was a neighbor down the street whose brother had gone from genius-level to mentally retarded because his parents had given him a new drug to stop bedwetting.
Today there are more people living with special needs than at any other time. We all need to change how we treat them.
My molasses mind is also not the best at memory. I pray that I never acted cruelly to anyone who was different. I pray that I never called anyone the R-word. I pray that, aside from that young man I stared at, I didn’t make any other parent or child feel even more exposed than they already felt.
But I’m not perfect, so I pray for forgiveness if I did do any of these things. As my daughter Sophie and I have said so many times, I hope I would not act like so many of the people we have encountered in Caleb’s life who have been cruel. But without Caleb I will never know for sure.
The main reason I write my blog, Neverland Without a GPS, is so other parents like me realize that they are not alone. Sometimes knowing that has been the sole reason I could get through a day. The other reason I write this is to give a glimpse to those who don’t have a special needs child. I want everyone to know that we parents of special kiddos love our children as much as they love their children. We don’t see disability when we look in their eyes—we see our babies and the love is just as powerful and soul-soaking as the love any parent feels for their child.
When viewed through this prism, I hope that typical parents may choose to not stare when one of our special kids acts up in the grocery store. Or when they walk through the hallway at school. Even if it’s a typical child having a tantrum, it does no good to stare or whisper. We’ve all been there, so either smile sympathetically or walk away.
So much awareness of people with special needs has flooded the culture that I really hoped we were making strides at accepting everyone regardless of anything that might make them different.
Then this man not only called out the reporter, he also made mocking hand gestures. He altered his voice. He contorted his face. The man he so callously and ruthlessly mocked was so intelligent and high-functioning that he became a reporter. He deserves infinite respect, not derision, and certainly not condescension from someone who is seeking to be the leader of one of the most powerful nations on the planet.
It took me three full days to understand why this event upset me so deeply. It took days for me to burrow into my soul, find the thorn of insult and, pull it out and examine it in bright sunlight.
I learned that what hurt the most was the knowledge that this man’s view of a man with physical struggles was not unique to him. There are ignorant, uneducated and cruel people out there who will judge another living, breathing human being based on their differences. These shallow beings want to reduce my son and anyone who is the slightest bit different to an inferior species.
In college, I took two courses on the Holocaust. I studied slavery in America and the civil rights movement. I studied domestic abuse. In my continuing studies, I’ve listened to and read stories from gay and transgendered individuals. One consistent theme in all of those studies was man’s inhumanity to man. I am constantly floored by how deplorable we can be to each other. The underlying theme, weighed down by shame like a broken muffler dragging underneath a car, is the immense hurt that people can inflict upon their very own kind. Those classes changed me and gave me a soft heart toward anyone who is belittled or badgered or excluded for being different.
I am not claiming to be more enlightened or more sympathetic than anyone else. I’m simply the mom of an extraordinary young man who was born missing a tiny piece of his 22nd chromosome. He did nothing to cause this. He knows no other reality. I am awed by his mental, physical and emotional strength every single day.
I am disgusted that anyone, presidential hopeful or not, could not only not value others but also degrade those who deserve enormous respect. I am reminded that there are horrible people who pride themselves for making snap judgements and view themselves as somehow above anyone else. There are people who truly believe they are better than anyone else.
I am profoundly grateful that my son is pure, undiluted light. My son is strong. He’s the strongest, funniest, most introspective man I’ve ever known. He has had to learn to live in our world, when his world makes so much more sense to him. He’s overcome challenges and trials that would fell a weaker person. Everyone who meets him is entranced by his smile and his deep grizzly bear giggle. I am fortunate to bask in the light of his soul.
People who choose to focus on anything any of us is missing have no understanding of all that we are. They are the ones who have the real handicap.
Kate Welch, author of the blog “Neverland Without a GPS” shares her journey as a proud, single mother of two great children—her 20-year-old daughter who is a microbiology major in her third year of college and her 19-year-old son who has 22Q Deletion Syndrome.
Through her series here, she hopes to reach out to everyone who belongs within the rare community and ben an asset who can spread knowledge and understanding on the topic of caregiving to an adult child.