It’s not a bad thing. It is simply part of who I am. I have been blind for the last 28 years of my life and visually impaired for 28 years before that. I have also been-in no particular order of priority-- a Jewish woman, a life coach, a Zionist, wife, mother, grandmother, aunt, friend, daughter, sister, disability advocate and community leader. My son accepts all these aspects of my identity as well as my blindness because that is all he has ever known. He doesn’t think of my disability any more than my being his mom, being Jewish or any other of my identities.
Nothing changes your life quite like becoming a parent. Suddenly, you are responsible for this tiny human who needs your love and care. Anyone who lives with a disability knows that adaptations are a part of life, and adapting for this next stage in life is no exception. From safety issues to daily tasks, now is the time to get your life and your home ready for this big change.
In the spring of 2015 I started going to therapy for the first time. I was a couple of months away from going through with a pre-planned suicide attempt for my 25th birthday before, almost at the last minute, I randomly sought help. With a series of unexpected deaths and abusers that lined my mental oasis, the seeds of depression had bore the fruits of fear, self-harm and loathing. Making my peace with God, I counted down the days until I turned 25.
Non-verbal learning disability means that the verbal (especially visual) is easy for individuals like me to memorize and understand. Need me to write out and remember exactly how your long name is spelled? Honey, I got you. I’ll remember which vowels have the exact accent and umlaut over them.
The swift punch-in-the-gut of COVID-19 has hurled our wellbeing into a state of confusion, dilemma, and reflections. No longer do we wake up early to prepare for work, but change our top and plug the laptop’s charger to conduct remote working in the kitchen. Although it seems impossible, we have found ourselves more online to replace the in-person interaction at work, school, and personal lives. Besides such a leap of change, the news has flowed in with stories about death of loved ones, despair in isolation, and desperation for breakthroughs in news and research. While the gloom hovers in the air of the everyday living, a shift in narrative pervades.
“I want to be a citizen just like any other,” said a disabled Peruvian woman in an interview with the Human Rights Watch. Her statement specifically applies to voting impediments that prevent her from participating in Peruvian elections. In 10 words, she eloquently summarized the most pressing side effect of systematic voter suppression in reference to disabled people; they are rendered second-class citizens.
There are lots of great articles out there that detail the specifics of Chris’s training program, and the challenges he faced in preparing for the Ironman. I won’t rehash them here, as this is not a piece about athleticism. What I want to write about instead is Chris’s mission—not just to become an Ironman, but to be an advocate for and inspiration to, all individuals with Down Syndrome.
People who struggle with nonverbal communication, such as individuals on the autism spectrum or with non-verbal learning disorders, such as myself, are especially vulnerable to this. We struggle with understanding sarcasm, eye rolls, and other such nonverbal social cues. Making friends, as a result, is really, really hard for us, and when we get friends, we automatically assume that if they’re hanging out with us, they’re doing it because they love and care about us. Even when they say and do mean things to you.
I realize that in many cases the idea of having special needs or caring for someone with special needs can make other people uncomfortable, and they struggle to know how to help when they want to. I understand that from the outside looking in, special needs can seem like a horrible burden to individuals and families.
More than 40 million current U.S. residents came from another country in hopes of making a better life for themselves and their families. That’s 13.6 percent of the population, which puts into perspective how big of a role immigrants play in our economy and society.
