My Sister Heidi, Beaming in the Spotlight
From inaccessible playgrounds to doctors who wanted her to live in an institution, my family and I faced many obstacles in helping my older sister Heidi belong, but we did our best to include her.
I sighed with frustration and clasped my fists open and shut, open and shut as they hung at the sides of my black jean shorts. Heidi sat next to me, her back leaning against the cherry red upholstery of her black electric wheelchair, a line of drool falling onto her glass tray. In front of us loomed a playground.
The playground was ordinary. It looked like thousands of equipment sets across the country, but to us, it was an insurmountable challenge. The brightly painted ladders, the steep slides, the swings, and the platforms that sat inches above the blacktop were as far out of our reach as the peaks of the Rocky Mountains behind our grandparents’ cabin in Utah.
It was ironic that Redwood, a facility in northern Kentucky for persons with disabilities and founded forty years earlier by the parents of a boy born with cerebral palsy, like Heidi, would have an inaccessible playground, but it does. It was 1992 and nearly all playgrounds across the nation were inaccessible to persons in wheelchairs. Even though the Americans with Disabilities Act had passed two years earlier, most places were inaccessible, and we had to maneuver Heidi’s stroller or wheelchair over curbs, jostling and bumping her.
This was my first Wednesday volunteering at Heidi’s day camp, something I did a few times over the summer. I was nine years old and shy, so I glued myself to my 11-year-old sister’s side even more than normal. She was my safe spot as we encountered scores of new people. She wasn’t afraid though. She enjoyed being among crowds and gawking at everyone, following their movements with her soft brown eyes. Mom and Dad joked that a thrilling present for Heidi would be to spend an afternoon in Chicago O’Hare’s busy airport, watching people rush to catch their planes.
At Redwood that summer, I navigated Heidi through the throngs of people at the swimming pool by holding onto the back of her bright red inner tube, a game that made her chortle. I assisted her with arts and crafts by holding her hands in mine to do the activities together.
We would have a lot of fun together at camp, just like we always did at home, but we wouldn’t have fun on the playground. There, we had to watch other kids skip about, play tag and zoom down the slide. On that first visit, as I realized Heidi couldn’t play, I stewed and fumed.
Heidi’s physical disabilities caused by the rare disease microcephaly meant she was unable to walk, and she had a hard time holding objects or swallowing. Heidi also was deaf and couldn’t speak. These disabilities made it more difficult to assess her full mental abilities, but the doctors said it was much lower than that of a typical person.
Disabilities or not, Heidi was sensitive to being included or excluded. Yes, she liked to people-watch, but she liked to be right in the action even more. I saw her face had DEJECTED spelled all over it. Her head drooped, she drew her arms closer to her body and she softly whined to express her sadness.
I wished I was strong enough to move her around myself, the way I saw Dad hoist her slight body onto his shoulders and follow our younger sister Mary and me across the wooden bridges and down the slides of the Cincinnati Riverfront playground. I considered lifting her out of her wheelchair to try to carry-drag her in my arms because we were about the same height and I was strong for my age, but I decided it was too risky; it would be worse to drop and hurt her on the metal playground equipment or blacktop surface beneath it than to have her feel left out.
After another moment, I glanced over at an empty blacktop nearby and an idea came to me. I pointed to it and signed to Heidi, “Let’s go play there.”
She nodded, and I silently placed my hand over hers on the joystick to guided her there. She could drive the wheelchair alone, but sometimes she struggled to drive it in a straight line to her destination. Plus, it could take her awhile to reach her goal and she didn’t have a fast reaction time to stop if an obstacle appeared. I had seen her accidentally veer into a wall or off a curb several times. When she was learning to operate her chair on our long driveway when we lived in Iowa City, Mary and I quickly realized we needed to keep one eye on her as we wrote with sidewalk chalk or built towns out of discarded moving boxes so we could jump out of the way if she began barreling toward us, unable to halt in time to miss hitting us. When I was six years old, I drew pictures of her running people over in her chair.
Once we reached the Redwood playground blacktop, I touched the button that regulates on/off and speeds. Click, click, click, I turned it up to the top speed that we rarely used. I placed my hand back over her hand so we could drive it together and I jogged alongside her as we zig-zagged up and down the area. Heidi’s dejected body language transformed into animation — she loved the speed. Soon I was the only one driving because she flung her arms upward at her side and waved them gleefully.
After I grew tired of running her up and down the blacktop in the summer heat, I directed her chair to the playground and, on a lower setting, navigated her wheelchair around the swings and under the slides and between the other kids playing. She uttered high pitched guffaws and I felt relieved. I just wanted my sister to have fun and to know that she belonged.
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In our family, including Heidi was our motto and mission, starting at the time of her microcephaly diagnosis at five months old. Before long, various specialists Mom took Heidi to see after her official diagnosis intimated that our parents could care for her at home for now, but they should send her away to live in an institution in the future. The specialists assumed that the amount of care she would require would be too much for them to handle. This was the typical view at the time, especially because there were few resources available for families to help them keep their loved ones home.
For centuries, persons with disabilities were routinely segregated from those without disabilities and even legislated to be out of sight. Until 1973, for instance, Chicago prohibited persons who were “deformed” and “unsightly” from exposing themselves to public view.[i]
In 1980, one year before Heidi was born, the film “Touched by Love,” based on Lena Canada’s 1978 memoir To Elvis with Love, told the story of a teenage girl with cerebral palsy who was played by actress Diane Laine. She lived and died at an institution. Her family never visited. A new teacher befriended her near the end of her life after the other teachers had given up on her and she became pen-pals with Elvis Presley. Until that teacher reached her, the girl had sat locked within her own world for a long time.
In 2020, I listened in horror during a run in the woods to a podcast interview with a woman my parents’ age, born in the 1950s, who didn’t know she had an older sister until she was 12 years old. The sister had disabilities and was institutionalized and completely erased from the family for years. As an adult, the younger sister became the guardian of her older sister, caring for her and ensuring she had a good life.
During my 30s, in the late 2010s and early 2020s, I read various memoirs by siblings of persons with disabilities. Most of them were born in the 1940s and 1950s and their siblings spent all or part of their lives in institutions. One woman, born in the mid-1950s, didn’t know she had a younger sister living at a facility until she was 13 years old, and she never visited her sister until she was 38.
Within this context, our parents made a decision that was out of the norm, though it was becoming more of a norm to keep children home now that they had better access to schooling through new 1975 legislation. A series of exposes in the 1960s and 1970s of institutions showed they were not serving even the basic needs of persons with disabilities. Instead neglect and abuse was rampant. By the time Heidi was born, public opinion was starting to shift toward seeing institutions as a place of last resort for persons with disabilities. Yet, given the extensive disabilities Heidi had, it was mentioned as an option.
Mom and Dad, 23 years old and newly graduated from college, decided the best place for Heidi was at home, with them. They would advocate for her and include her — and I’m so grateful they had the means to do so. I can’t imagine my life without Heidi.
When she was about eight months old, and just three months after she received her diagnosis, Mom took Heidi to see a specialist where they then lived in Indiana while Dad received his MBA at Purdue University. She observed a few kids with cerebral palsy all laying in wheeled beds in the waiting room. The kids were confined to beds because the muscles in their bodies were permanently stuck in a specific position, and even with help, they could not change positions to sit up or move.
A man in the waiting room who was accompanying his six-year-old daughter looked at Heidi and said to Mom, “Oh your daughter has the same thing as mine. It’s a lost cause, they’ll always be like this,” and he gestured toward the beds.
Mom politely nodded to acknowledge him, but inside she was furious. “Don’t you dare tell me that,” Mom thought. “I will make sure that is not Heidi’s fate!”
Mom worked daily to break Heidi of the habit of thrusting her back and rolling her head. She sat Heidi against her chest to keep her from arching her back so much that sometimes Heidi’s head left bruises on Mom’s skin. Eventually Heidi learned to hold her head up better.
Despite Mom’s and Heidi’s valiant efforts, around Heidi’s first birthday, her physical therapist gave her a series of tests and found that she was at the level of a typical two-month-old in motor and social skills. Indeed, across her life, her progression could often be two steps forward three steps back as she gained and lost skills depending on her muscles, health and motivation. But Mom and Dad never gave up on her.
Thanks to Mom’s daily effort helping Heidi stretch her body through nearly daily outings to local swimming pools, through sessions strapped onto her wooden “standing board” and through all the play suggestions the therapists made, Mom was right, Heidi never lived life from a bed. Instead, she played every day with me and Mary, attended school and summer camp, and visited over half of the U.S. states during our vacation travel. She stood, with help, in the crashing waves of the Pacific and Atlantic Oceans, rode a horse with Dad, and enjoyed our family mountain hikes from his shoulders.
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On the last day of Redwood camp, there was a talent show. That afternoon, I twisted and maneuvered Heidi’s stiff arms into a black leather jacket and placed fire engine red sunglasses onto her head that a staff member handed to me even though I knew she’d soon pull the glasses off. Next, I clumsily applied ruby red lipstick to her lips that were wet with drool and rose-pink rouge onto her cheeks as she moved her hands toward the sunglasses. I’d never put make-up on anyone, and I hoped it looked okay. Lately, I was more into bicycling around our neighborhood and building blanket forts in our basement than playing dress-up with makeup. Heidi grinned at me beneath her half-on, half-off sunglasses, encouraging me.
Mom kept Heidi’s dark, thick brown hair long, which was a bit unusual for kids with disabilities as short hair is easier to manage. Mom thought she looks better with long hair, and she always wanted Heidi to look her best. She usually curled her bangs and put clip-in bows in her hair to match her clothes. In the mornings, when Mom held up clothing options for her, Heidi inevitably slowly reached her hand toward the bright and bold hues, like yellows, pinks and oranges. I’d rather wear muted, dark colors like blacks and greys and reds and plain jeans or jean shorts.
This day, Heidi wore a bubble gum pink and white striped top with a pink collar dotted with yellow stars. On the bottom of the shirt was a pink ruffle that was long enough to cover the top half of her pink leggings. In her dark brown hair was a matching pink bow and pink studs nestle into her ear lobes.
After I wiped the drool from her face one last time with a tissue and readjusted her sunglasses, I left her and found a seat in the audience near the front. Soon two staff members wheeled both her and a boy around her age onto the stage and placed them facing each other. The boy sang the song “My Girl” to Heidi while the staff members pushed their wheelchairs in rhythm with the music. A few other kids stood behind them and acted out being the “back-up singers.”
Heidi grinned widely and waved her arms as she sat under the bright spotlight. The other campers and staff members cheered and clapped their approval and even though she couldn’t hear them, she saw all those eyes looking at her and she giggled out loud. She was so glad to be “part of the action,” which is how Dad described her excitement over being included.
That is how I like to remember Heidi: beaming with joy, included, and in the spotlight.
[i] Mark C. Weber, Disability Harassment (New York: New York University Press, 2007), 17.
