My brother Tommy bags groceries for Giant Eagle customers.
I drop him off on Wednesdays, Saturdays and Sundays for his four-hour shifts at the store in McIntyre Square in the North Hills.
Sometimes I watch him before heading out: He stands at the end of a checkout counter and scoops up items from the conveyor belt, quickly and efficiently bagging them to keep the line moving. A job coach hovers in the background, stepping in when he needs guidance. I can see that he’s learned to bag raw meat separately to avoid cross-contamination, and he intuitively knows when to move to a counter with a longer checkout line.
Tommy has found purpose and joy in employment. He moonwalks between checkout counters, integrating his love of dance into the work. Customers know him by name and thank him as they leave the store. He’s thriving and I’m so proud of him.
But we’ve traveled a long, difficult road to get here: Tommy is 30 years old and this role at Giant Eagle is his first job. He has Down syndrome — a condition caused by an extra chromosome that can lead to intellectual disabilities and developmental delays. His vocabulary is limited and he struggles to complete tasks that require planning ahead.
With the right kind of support, he and so many others with disabilities can not only function, but flourish, in the workforce.
I’m now his legal guardian, but I’ve been parenting him since I was a child. He lives with me, my husband and our three children. We all moved from Upstate New York to Pittsburgh last year — a change that exposed him to other workers with disabilities and inspired him to find a job.
I was nervous when he expressed a desire to work. Would he be able to function in a job?
I’ve since learned that, with the right kind of support, he and so many others with disabilities can not only function, but flourish, in the workforce. More people with disabilities are finding employment, according to the U.S. Labor Department. Nearly 23% of people with disabilities worked last year — the highest rate since the department started tracking this group in 2008.
Our journey hasn’t been easy, but it shows what’s possible as more people like my brother enter the workforce and contribute to their communities.
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Our parents did their best, but it wasn’t enough
My parents met in a refugee camp in Thailand, which was crowded with people fleeing violence in the decade after the Vietnam War.
My mother grew up in southern Laos — territory that North Vietnam used to funnel troops and supplies to South Vietnam. Wanting to disrupt this supply route and crush a local communist force, the U.S. government dropped more than 2 million tons of bombs on my mother’s country. And landmines dotted the rural landscape, making even the rice paddies too dangerous to plow.
My mother felt she had to get out of there, so she left for the refugee camp against her parents’ wishes. There she fell in love with my father, a Cambodian Khmer speaker who learned to speak Lao just for her. He followed her to New York City, where I was born in the Bronx when my mother was just 16.
Our family had moved to Queens by the time Tommy was born a few years later in the early 1990s. My mother had no idea she was carrying a baby who had Down syndrome and found out after she gave birth. Parents today, on the other hand, can rely on widely used prenatal blood tests and ultrasounds to check for the condition. It’s a privilege that allows them to prepare after a diagnosis in a way my parents never could.
Though I was very young, I became aware of Tommy’s disabilities when early intervention therapists treated him in our home. They used play therapy to develop his fine motor skills, and taught him exercises to mitigate the weaker muscle tone that can affect children with Down syndrome.
I’m not sure if my parents fully understood Tommy’s disabilities. They both faced language and educational barriers, which kept them from accessing resources for parents of children with Down syndrome. My father was patient with Tommy, but he worked three jobs to support us and was rarely home. My mother couldn’t handle the pressure; she seemed to give up when Tommy fixated on things, which research shows may have been his way of coping with anxiety.
Though we lived in one of the most diverse places on Earth, I didn’t see many other people in our neighborhood with Down syndrome.
It meant I had to grow up fast and take on a parental role — as early as age 6 — to help meet Tommy’s needs.
He mostly communicated through non-verbal gestures that some found hard to understand. He couldn’t easily express what he felt and wanted, so I became his interpreter and advocate — a role I still fulfill. And I prepared his meals and watched out for danger, knowing I would get blamed if he got hurt.
But I was still a child who wanted to see myself reflected in my surroundings. Though we lived in one of the most diverse places on Earth, I didn’t see many other people in our neighborhood with Down syndrome. And like any kid, I embarrassed easily: I wanted to hide when my friends spotted Tommy and me at the park. They gawked at his Spider-Man costume, which he insisted on wearing everywhere.
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Rediscovering myself
All that caregiving prepared me for a career in early childhood education. I was so good with kids that I became the head pre-K teacher at an East Harlem nonprofit and taught third grade a few years later at a public school.
I married a friend from college who was wonderful with Tommy — a quality I knew I’d need in my partner, who would eventually have to help me care for him.
But I had to focus on my own life, too: I moved in with my husband and started a family. I earned a master’s in math education and used that knowledge to help my students learn. And I learned to turn off the radar that kept me so attuned to others, whose needs I constantly placed above my own.
Tommy was doing well at his high school, where he was given occupational therapy, vocational training and other types of education for students with disabilities. Though I knew my transition would be hard for him, it was the right time to step away and rediscover myself.
A tragedy and a guardianship
Tommy’s interest in work can be traced to his close relationship with our father.
He watched Dad juggle three jobs while we grew up, including washing dishes at the famous Waldorf Astoria hotel and hand-rolling bagels for local bagel shops. He saved enough to buy our family a house in Brooklyn — an incredible accomplishment in our extended family of refugees, none of whom owned their own homes.
But tragedy struck when Dad developed pneumonia in 2020, soon after the city shut down to prevent the spread of COVID-19. He was put on a ventilator, but died in the hospital while we waited helplessly, unable to go to his bedside due to COVID safety measures.
Tommy was devastated by the loss. I had moved Upstate and didn’t realize how bad it had gotten until I visited him a while later. He was covered in psoriasis plaques — scaly, inflamed patches of skin caused by an autoimmune condition that can flare when a person is stressed.
Shocked by his appearance, I sprang into action: I filed a petition for adult guardianship — a complicated legal process that would allow me to make decisions in Tommy’s best interests. I couldn’t afford a lawyer, so I navigated the process with some free legal advice and was appointed Tommy’s guardian by the court.
When he came to live with me, I told him to unleash his pent up grief — an act that’s discouraged in Southeast Asian culture. He cried and cried in my arms.
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How Tommy found passion and purpose
My husband’s career brought us to Pittsburgh, which was a change we all needed after those last few stressful years in New York.
I took Tommy with me on a Giant Eagle grocery run one day, where we saw workers with disabilities. Excited, he wanted to join them. For weeks, he pointed at Giant Eagle stores we passed in the car and asked, “Eh, work me?” It left me with a big decision to make. Would he benefit from working?
Employment can be hugely helpful for people with Down syndrome and other disabilities, according to advocacy groups. A job can improve a person’s skills, make them feel socially included and give them a sense of independence. And if an employer offers the right support, having a disability shouldn’t keep someone from succeeding in their role.
But the fact that so few people with disabilities are employed, despite recent gains, speaks to the ableism in the labor market. People with disabilities across race, gender and age “are less likely to be employed and more likely to work fewer hours, earn lower incomes, and accumulate less wealth than their counterparts without at least one disability,” according to a report by the Center for American Progress, a Washington, D.C.-based think tank. And some who also belong to other marginalized groups — people of color and LGBTQ+ people with disabilities — are even less likely to find jobs.
With all this in mind, I asked Tommy a question: “Are you sure you want to do this?”
He was sure.
I helped Tommy apply for an hourly position in the North Hills. The store leader interviewed him a few weeks later, relying on my interpretations because he couldn’t say much. But he did say one thing: “I love my daddy, my daddy work.” I realized Tommy was trying to honor our father by finding purpose in work — something he’d watched Dad do his entire life.
Giant Eagle hired him as a grocery bagger — a job that’s more complex than people realize. Tommy would have to follow strict food safety rules and use sturdier items to “build walls” within bags to protect anything fragile, according to company guidelines.
I knew he needed onsite support while he learned, so I reached out to Pennsylvania’s Office of Vocational Rehabilitation [OVR], which has a location in Pittsburgh. A job coach was brought in from Wesley Family Services who’s developed a good relationship with my brother by learning to read his non-verbal cues. The coach said Tommy set a boundary by holding up his hand — a sign that he wanted some space. And he always tells me how much customers love Tommy, that he’s finding community through his work.
He had learned to step in and help others — talk about a proud sister moment!
I knew Tommy wouldn’t have it easy in the workforce with his cognitive barriers. We’ve had to work on things like shortening his morning routine and his tendency to wander on the job. But I was overjoyed when I witnessed one of his triumphs: When he saw there were no customers at his checkout counter, he moved to a busier one to assist his teammates. He had learned to step in and help others — talk about a proud sister moment!
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I want to encourage that kind of independent thinking while making sure his needs are met. It’s why I’m working with OVR to get Tommy some assistive technology, such as a tablet that will help him communicate his need to take breaks or use the bathroom. That tech will be crucial as the coach gradually fades from the job site to give Tommy more autonomy.
I hope more people with disabilities will see Tommy in his role — just as he saw himself in those workers who inspired him. I want him to show other adults with disabilities that they can break the mold of what success looks like, and that they don’t need to be bound by what society thinks they can — or can’t — achieve.
Susan Henderson is a professional childhood education teacher. She can be reached at susanhenderson24@gmail.com.
Venuri Siriwardane is PublicSource’s health and mental health reporter. She can be reached at venuri@publicsource.org or on X, the platform formerly known as Twitter, @venuris.
This reporting has been made possible through the Staunton Farm Mental Health Reporting Fellowship and the Jewish Healthcare Foundation.
