Photographer Marien Armstrong has lived her life among Texans with disabilities, knowing firsthand the daily challenges they and their families face. As a teen, she volunteered at a cancer camp for kids run by her father. Later, she focused her Texas State University master’s degree thesis project on portraits of the disabled community.
After graduating in 2017, she started Marien Elizabeth Photography, an “inclusive photography” portraiture business focused on portraits of families whose members have special needs.
When the pandemic struck, Armstrong saw its impact on these families and felt she had the capacity to illuminate their struggles for a wider audience.
The result is Together We Adapt, a portraiture project featuring San Antonians with disabilities and their families, complemented by their stories of adapting to the often-severe challenges they have faced in coping with the pandemic.
Shaking the snow globe
The Lewands are one such family. Eight years ago, an in-utero stroke rendered their son Mason blind, nonverbal, and unable to walk.
When San Antonio school districts extended their spring breaks in March and switched to remote learning, Zoom classes were not an option for Mason. As schools struggled to adapt learning for students with special needs, his parents Traci and Abe Lewand took over teaching duties, working to maintain some semblance of their schedule-driven son’s daily routine.
Then in April, as hospitals restricted access to treatments and family members during hospitalizations in order to prioritize COVID-19 patients and minimize risk for spreading coronavirus, Mason had several serious ailments suddenly arise, requiring him to be hospitalized.
Mason needs 24-hour care and cannot be left alone for more than three minutes at a time, Traci Lewand said, which proved impossible for the already overburdened intensive care nursing staff. She took on the responsibility of staying with her son, and without the usual help available from family members, she said those 10 days were the hardest of her life.
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The Lewands made it through that significant challenge, but faced difficulties with strict restrictions on the daily therapies Mason would usually receive.
“It took a long time for our family to get to a real rhythm of what it meant to have Mason in our lives, and what the day to day looked like,” she said. “We finally figured it out after eight years, and then somebody just came and shook the snow globe on us.”
“This time hasn’t been easy for anyone,” Armstrong said. But for families with a medically fragile child, she said, the pandemic can be “just a really, really rough time for them.”
Still, she said their struggles have a positive side to be conveyed. Her portraits attempt to portray these families as they are. “I’m not going to just take a portrait that happens to have your child with disabilities. … I always make sure that everybody in the family looks dignified, but especially the family member who has special needs.”
The difference between standard portrait photographers and Armstrong was immediately apparent, Lewand said.
Mason initially had a one-year life expectancy, she said, and “every year, we try to capture those memories just because it’s fleeting, and we don’t know whether he will be with us from one day to the next, and so we want to have some of those pictures as memories.” But most portrait photographers did not have experience photographing people with disabilities, Lewand found.
“It was an insanely stressful time, every single time, until we met Marien,” who allows extra time for any difficulties that might arise during portrait sessions and communicates well with her subjects, Lewand said.
One family portrait shows Mason being read his favorite book, Ben’s Adventures, “which for me is a very precious memory because it’s something that we do daily,” Lewand said. Traci, Abe, Mason, and sisters Amber and Stella are all looking straight into the camera and smiling, and for Traci Lewand, the portrait “captured the fluidity of the joy and the love that we have for each other.”
Patience and compassion
Cathy and Al Gutierrez initially met Armstrong after winning a contest for a free family portrait. In her contest entry, Cathy Gutierrez wrote that they had been longing to have a family portrait, but their 25-year-old daughter Rebecca’s autism spectrum disorder had so far prevented the possibility.
“We just could never do it. People were not equipped to do it, or our daughter wouldn’t last through any session,” Gutierrez said.
They won the contest, and Armstrong visited their home for the portrait session. “Our daughter was very comfortable with her,” Gutierrez said of Armstrong. “We were able to finally have portraits taken of our family, and Marien was just delightful to work with.”
The experience changed their minds. “Marien was the first person who made us realize this really is possible, and we can do this.”
The pandemic lockdown has presented multiple challenges for the family, Gutierrez said. Though her husband is Rebecca’s primary caretaker, therapists and teachers were unable to visit, causing a regression in their daughter’s physical and social activities.
“All of her services essentially discontinued when everything went into a lockdown,” Gutierrez said, which caused stress for their daughter. With an inability to communicate, “she had no concept of what this means. She just knew that all of the sudden, people were no longer coming to the house to be with her.”
Gutierrez and her husband said they are aware that other families are in similar situations and appreciate Armstrong’s efforts to tell their stories through photographs and words.
“Our story is just one story,” Gutierrez said. “It’s appreciated that Marien can recognize this, and that she has the means to be able to tell that story from a variety of ways.”
Armstrong provides interview questions for each family to spur the telling of their pandemic adaptation stories and includes their answers alongside the portraits. In including each family’s voice, she is able to show “not only our differences, but our similarities,” Gutierrez said.
“We’re no different than the larger community as far as [questioning] why did this [pandemic] happen and what do we do, but there may be extra layers to navigate in the special needs community that other communities may not have to address,” she said.
Armstrong accepted orders for Together We Adapt through Sept. 22. For a nominal fee, each participating family will receive three portraits and a copy of the book, to be published in November, but Armstrong ultimately hopes the book will gain a wider audience.
“My goal is to raise awareness to the struggles so that people have more compassion in turn,” she said. “When you’re aware of the things that someone is going through, you have a lot more patience and compassion for them when you see them out.”