Don’t forget those with disabilities, like my sister; COVID shutdown hits her hard

My sister Jennifer isn’t smart, not by the world’s definition anyway. Jenn needs help with basic skills like dressing and hygiene. Her education consisted of homeschooling and special ed. classes.

This Irish twin of mine — she’s 11 months my senior — didn’t learn to talk until she was almost 5 years old. I have distinct memories of her placing her forehead against mine, making inarticulate sounds, a cross between singing and grunting. When she finished, we both felt understood.

The bond we share is downright symbiotic and always has been. When she’s happy, I am, and of course, the inverse is true.

Right now, we’re both unhappy. Washington’s “stay-at-home” orders have prevented us from seeing one another except through FaceTime, and because she doesn’t hold the phone correctly, most of the time I end up talking to her ceiling.

Jennifer has Williams Syndrome, a genetic disorder that comes with a multitude of challenges; among them is anxiety. Hugs aren’t just a show of affection; for Jenn, they’re downright medicinal. She gets them from her caregivers, but as she would tell you, “My sister’s hugs are the best.”

Her move into a group home was supposed to be temporary --my daughter Kate needed hospice care last year -- but it turned out Jenn liked having roommates, and she especially liked taking the Pierce County shuttle to one of her favorite places in Tacoma: TACID.

Tacoma Area Coalition for Individuals with Disabilities, (TACID) is one of Tacoma’s unsung treasures. From potlucks to weekly bingo games, this community center provides a purposeful place for Jennifer and her friends.

Jennifer is also missing the specialized programming provided by Metro Parks Tacoma. She and her friends can no longer take cooking classes, bowl, sing karaoke or dance. These activities also provided much needed respite for families and caregivers.

I know from personal caregiving experience that breaks are a necessity. I have scores of delightful stories to tell about Jenn, but there have been times when she’s challenged my patience.

She once called 911 because I wouldn’t let her have a third cinnamon roll. I’ll leave it at that.

Roughly 15 percent of the world’s population live with some form of disability; not all of them are at a higher risk for COVID-19, but many face barriers when it comes to information and access to social services and health care.

The “stay-at-home” orders present a challenge for all of us, but for Jenn and others who have disabilities, the real suffering comes by way of loneliness and loss of routine. Jenn, or “Aunt Jenn” as she is known in our house, can no longer come over for marathon Uno games and plates full of slurp-worthy spaghetti.

Jennifer relies on me to translate the world for her, a task that’s become increasingly more difficult as we both get older. I’ve spent a lifetime coming up with answers to questions like, “Why are bullies so mean?” “Why do people we love die?” “Why do Ben and Jerry put bacon in ice cream?”

Now she wants to know when we can see each other again, and I don’t have an answer. But I’m willing to explain over and over why it’s so important for us both to stay home.

Jenn doesn’t understand words like pandemic, quarantine or social distancing. She can’t grasp the concept of short-term pain for long-term gain. If it were up to her, she’d lift these orders now, not knowing how vulnerable she and her housemates are to the serious consequences of this contagious disease.

I reject the idea that older people or those with medical conditions or disabilities should be deemed an acceptable risk so we can rush back into business as usual. I’m willing to wait for testing and tracing, and I hope others are, too, because I want to grow old with this birthday-cake-loving girl.

Jenn’s been my lifelong friend, and for someone who’s considered not so “smart,” she’s the best teacher I’ve ever had.

I have a vision of us as old ladies, leaning on one another as we always have, forehead to forehead, singing a song only we understand. And, yes, there will be cinnamon rolls.

News Tribune editorial page writer Karen Irwin can be reached at karen.irwin@thenewstribune.com

This story was originally published May 21, 2020 at 2:00 PM.