Behind the Stigma

How the label of Down Syndrome keeps us from understanding the people who have it

Geography meant that cousins Lani and Alyssa weren’t close as kids. They met a couple times as teenagers, and most recently at their grandmother’s 90th birthday bash. Lani remembers Alyssa as chatty and confident, but they were still essentially strangers. Later Lani realized how many assumptions she had made about Alyssa because her cousin has Down Syndrome.

Lani wanted to investigate those assumptions. Being a photographer, she reached out to see whether Alyssa was up to being the star of her own documentary.

“I remember seeing a tweet with an image of a person with Down Syndrome wearing a shirt that said ‘Relax, it’s just an extra chromosome,’” says Lani Holmberg. “That sparked the idea I suppose. I was interested in exploring empathy, stereotypes, and photography, so starting with myself seemed like an honest thing to do. If I could be open to exploring narrow-minded assumptions I had myself, then I thought there might be some power in that. I hoped others might be able to do the same.”

Visits were planned by text. A train ride followed, a knock at the door, a hug hello. For six months Lani trekked from the Melbourne suburbs to spend a few days with Alyssa. They hung out as cousins do, sipping cups of tea, watching soap operas, taking buses to football matches, and hitching rides to parties.

Sometimes Lani pulled out her camera or recorded a conversation. Between the chores and TV and dinners she got to know Alyssa. Down Syndrome became just one difference between two people who have so much in common.

Those shared six months became And Holland Has Tulips, a flowing and immersive confluence of imagery, narrative, and audio (please go check it out as it’s very different than simply seeing the photos on their own here). In it, Lani walks us through Alyssa’s life as well as her own experience learning to find the person hidden behind a label.

Lani grew up over 150 miles north of Melbourne in Kerang, a rural community of a few thousand people. She remembers the surroundings of childhood as flat, dry, salty and uninspiring. She also remembers Brian who lived near her high school and also had Down Syndrome.

“I felt sorry for him,” she says. “I certainly didn’t see him as someone behind that label. I remember feeling a bit panicked if I said hello in the supermarket, or at the playground or something, and he didn’t respond or couldn’t understand me. I didn’t know what to do.”

Tulips is an attempt to confront that discomfort head on. Nothing was off limits from the very beginning. Alyssa, her mother Lois, and her sister Carly, were completely open with both their home and their lives. It was Lani who had a hard time operating at first, too uncomfortable to ask certain questions or shoot certain things. Worse still was that whenever Alyssa surpassed Lani’s expectations of what someone with Down Syndrome can do, that painful lump in the throat, the awkwardness and shame, returned.

“Every time I was surprised by something Alyssa said, I would catch myself and ask, ‘Why are you surprised’, says Lani. “Most times it was because I underestimated her ability to think something through, to perceive something so accurately, to describe her own emotions. That happened less and less as I got to know her more, but in the early days she continued to challenge assumptions I had about her.”

There was plenty of opportunity for Alyssa to prove herself. Three days a week she stays home to allow Lois time to work. Carly uses a wheelchair and requires constant care. Hanging out with the sisters showed Lani the ins-and-outs of their routine, a strict schedule which gives Tulips its shape.

The conversation between chores showed who Alyssa is as a person, and her amicable nature chased the lump from Lani’s throat. Down Syndrome turned out to be just one facet of Alyssa, mixed in with caring for Carly, gossiping about friends, crushes on actors, and the little disgruntlements everyone has.

“This experience has been more about understanding and respecting difference and disability, but not letting it get in the way of connection or getting to know someone,” says Lani. “In many ways this story is not one about Down Syndrome, it’s about what we have in common. All of our human elements — love, family, struggle, joy and loss — that, once identified, allow us to see beyond labels.”

Twice a week Alyssa goes to work — one day at Kmart and the other at a hair salon. Getting out of the house allowed Lani to see how the outside world perceived her cousin. Strangers fumbled exactly how Lani used to.

“Sometimes strangers would glance at me to see if they should be speaking to me or Alyssa, like if we were buying movie tickets, or topping up her phone credit,” says Lani. “Particularly if there was a minor misunderstanding, the explanation would be given to me instead of Alyssa. In those little glances, those moments of uncertainty, I saw my own discomfort, that lump in my throat, reflected right back at me. An uncertainty about how to communicate with someone with Down Syndrome.”

The decision to visit for several days at a time over the course of months gave Lani a lot of flexibility. The household routines established the narrative themes she wanted to use, and knowing what to expect allowed her to fill in the gaps to flesh out those themes. She could also experiment with mediums. After shooting Alyssa helping Carly to bed several times and feeling static photography couldn’t pull off the experience, she started using video.

There was a ton of material. Lani knew early on that she didn’t want Tulips to be a digital photo book, but sifting through the photos, videos, and audio she also knew a lot would have to be excised. The story is quiet and too easily lost in a glut of media, so Lani tried to emphasize pacing and flow as she pieced everything together.

“Like a well-timed pause when delivering a talk or a piece of music, I wanted the story to have places to sit and breath in a visual way, to let the reader consider their own reactions to Alyssa and her story,” she says.

Alyssa unknowingly became a collaborator with the story’s design; her diary inspired the episodic form of Tulips, conveying the monotony of the family’s routines but leaving room for special occasions and Lani’s thoughts. George Hiley and Bretton Bartleet were tapped to help with the site’s backend, which not only meant that everything was coded correctly but also gave Lani people to bounce ideas off of.

Once everything was laid out Lani sat around the dining room table with Alyssa, Lois, and Carly, and they slowly went through everything. They lingered here and there to talk about things, stopped to laugh and stopped to cry. Lani had been nervous about sharing the work, especially her writing.

“It was difficult for me to explain to Alyssa that I had underestimated her but it was important to do so,” says Lani. “I thanked her for teaching me and letting me tell her story.”

Since the project was specifically designed for online Lani has no immediate plans for a physical exhibition. She does want to continue documenting her cousin. Alyssa and Carly may not be able to live at home as they get older, and Lani’s become interested in issues of independence for people with disabilities. But she has a more immediate project lined up.

“I am planning to make a book with Alyssa,” she says. “She doesn’t use the internet at all so as much as she loves Tulips, it’s not something she can show others easily. Same goes for her family. Her Aunt Julie printed off all the text and images to make a book for Grandma Ethel and my heart broke! Here was this very personal story documenting their last six months and they can’t access it easily. So Alyssa and I are going to hand-make a very small run for friends and family. It’s a nice way to keep the project going for both of us.”

Right now Lani has started researching a story on young girls who are abandoned on the outskirts of Kolkata. She’s been able to return to India once and thinks this will be her next big project, but she also has a part-time job to work around.

Relying on photography for an income can be tricky, so Lani’s satisfied to take things slow. She rides her bike from home to the office to the studio.

After years of avoiding the place, she’s also visiting her parents in Kerang, and finding the peace and quiet, the comfort and familiarity, much more enjoyable then when she was growing up. And she’s slowly learning more about her family and relatives she never really knew.

“I’m very slowly working on a personal project with, and about, my grandparents,” she says. “Lois’s stories about my maternal grandfather really intrigued me, I realized I knew very little about this man who died when I was a baby. I’m interested in trying to piece him together through existing images, footage and stories of others.”

This article’s use of Down Syndrome instead of Down’s Syndrome is based on the guidelines of the National Down Syndrome Society.

All photos and video by Lani Holmberg

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