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Breath & Shadow

Fall 2020 - Vol. 17, Issue 4

"It’s Not All in The Family"

written by

Wendy Kennar

My grandma (my mom’s mom) always seemed old to me. Her short gray hair was permed at a local beauty school. She wore dentures and kept them on her bedside table each night. When she came to our house, she struggled to make it up the three steps outside our front door. She sat a lot - on chairs, in her wheelchair, in the passenger seat of the car, often waiting for us to come out of the house and visit with her there.

My son’s grandma (my mom) has always seemed young to me. She’s 75 and becomes upset when something interferes with her daily visit to the gym. She lifts weights, works out on the elliptical and treadmill and has her gym buddies who share fist bumps with their “gym mom.” She has all her own teeth, including her wisdom teeth. Her hair, pulled back in a ponytail, is still mostly brown, with only a bit of gray around the temples. She walks daily - in stores and around the perimeter of the gym after her workout. She gets on the floor to play with my son and rides the swings with him at our local playground.

And then there’s me. I’m almost 44 years old, and if we plotted this out on a line graph, my grandma would be on one end, my mom would be on the other end, and I would be somewhere in the middle.

Like my grandma, I am a disabled woman. But with a big difference. I live with an invisible disability, an autoimmune disease called Undifferentiated Connective Tissue Disease. I experience pain, fatigue, and weakness in my legs yet I walk without assistive devices.

After twelve years as an elementary school teacher, I retired due to my disability.

When my son was younger, he asked me about the blue parking spots he noticed in our market’s parking lot. I told him those were reserved for people who had a special pass. Those spots were up close so it was easier for people who needed them, people who had trouble walking and might use a cane or a wheelchair, like it shows on the blue sign.

But now I have one of those blue signs in my glove compartment. And I hang that very visible blue placard from my rearview mirror when parking at a metered parking space.

Occasionally, I use it to park in a handicapped spot. But I’m always hesitant to do so. I worry about the day someone accuses me of using the placard illegally, of me not being deserving of it.

If confronted, would I have the words and the courage to tell the accuser that not all disabled people look alike? That not all disabilities are visible? That I would gladly trade the convenient parking space for pain-free days? That I want to enjoy, as much as possible, spending hours with my son exploring the California Science Center. So I’ll take care of myself as much as possible, which means parking closer to the entrance - even if it doesn’t look like I need to.

I remember once being out with my grandparents. My grandpa had parked the car in a handicapped spot and was walking to the trunk, to retrieve my grandma’s wheelchair. I got out of the back seat in time to hear a passerby yell at my grandpa. “Shame on you for taking this spot when you don’t need it.”

As he pulled the wheelchair out, my grandpa tried to explain his wife was in the passenger seat.  But the angry stranger kept going.

I don’t know if this exchange upset my grandparents. I do know that I remember that event from more than 30 years ago.

It still isn’t easy for me to describe myself as a disabled woman.

For a long time I didn’t think a disabled woman sat on the ground pulling out weeds. Or played handball with her son. Or helped her elderly neighbor carry in groceries. But I do all those things.

Because being a disabled woman doesn’t look the same for every woman.

And it doesn’t look the same for me each day.

When I was growing up, my grandma was the embodiment of disability.

Strokes, rheumatoid arthritis, and breast cancer had ravaged her body.

My situation has caused me to re-frame what it means to be disabled and make peace with this broad range of experiences.

Wendy Kennar is a mother, writer, and former teacher. Her writing has appeared in a number of publications and anthologies, both in print and online. She prefers sunflowers to roses and thinks chocolate is okay at any meal. You can read more from Wendy at where she writes about books, boys, and bodies (living with an invisible disability).

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