Updated on October 25, 2022.
When Olympic bobsledder Elana Meyers Taylor talks about her two-year-old son, Nico, she sees what others may overlook.
“Nico's the biggest hugger ever,” says the five-time silver and bronze medalist. “When he folds into your arms, how could you not love him and want to do whatever you can?”
In many ways, Nico is just like other toddlers his age. He loves going to the library and interacting with other kids. He’s potty training and learning how to walk. He also throws an occasional temper tantrum. But as a child with Down syndrome, he faces more challenges than his peers.
Down syndrome is a genetic disorder that causes developmental and intellectual delays. The condition is caused by an extra copy of chromosome 21, which affects the development of the body and brain.
It is the most common genetic chromosomal disorder and cause of learning disabilities in children, according to the Centers for Disease Control and Prevention (CDC). Each year, roughly 6,000 babies in the country are born with Down syndrome. That’s roughly one in every 700 births.
When Taylor and her husband, fellow Team USA Olympic bobsledder Nicholas Taylor, learned about Nico’s diagnosis, they didn’t have time to react emotionally, she says. Instead, they became laser-focused on what they needed to do next and how to raise their son to be as happy and healthy as possible.
“Some parents describe it as a grieving process, but we never really had that,” Taylor recalls. “Kids with disabilities are pretty awesome. It's not all doom and gloom… like people make it sound to be.”
For years, Taylor has been involved with various advocacy efforts, primarily women’s rights. She has used her platform as the most decorated African American Winter Olympian and female bobsledder in history to effect change in local communities. But when Nico was born, Taylor shifted her focus to help advocate for people with developmental disabilities.
In August 2022, Taylor was appointed to the Georgia Council on Developmental Disabilities, which works toward social and policy changes that promote opportunities for people with developmental disabilities and their families.
“There's a lot of work that needs to be done,” she says. “There are still people who view disability as a burden, and it's just crazy to me that this persists. But it's one of those things that it doesn't mean that we stop fighting the fight.”
Facing deeply rooted health disparities
Nico is one of millions of children who live with a disability. When he grows up, he’ll be a part of an even larger population of disabled American adults.
The U.S. Census Bureau reported that more than three million children in the United States had a disability in 2019, with intellectual disability being the most common. An estimated 61 million adults in the United States—one in four Americans—currently live with some form of a disability, including mobility limitations, deafness, and blindness, as well as intellectual disabilities, according to the CDC.
Not all disabilities are visible, but these differences are often associated with less access to health care and an increased risk for certain health issues. In fact, people with disabilities are three times more likely to suffer from heart disease, stroke, diabetes, or cancer than adults without disabilities. They are also five times more likely to experience mental distress, the CDC reports.
A September 2020 CDC report, which compared the prevalence of frequent mental distress among adults with disabilities with the mental distress of those without disabilities, found that disabled people were 4.6 times more likely to suffer from mental distress. The researchers noted that 32.9 percent of disabled adults reported experiencing 14 or more mentally unhealthy days in the past 30 days, compared to 7.2 percent of abled adults.
Barriers to health care, such as difficulty traveling to appointments or accessing adequate care, can affect disabled people’s long-term well-being and quality of life, explains Lex Frieden, Ph.D., professor of Biomedical Informatics and Physical Medicine and Rehabilitation at The University of Texas Health Science Center at Houston.
Although the landmark Americans with Disabilities Act of 1990 (ADA) banned discrimination based on disabilities, Frieden—who is lauded as the chief architect of the ADA—says transportation to clinics continues to be one of the biggest obstacles.
People with disabilities have far more unmet health care needs than the general population, according to Frieden. “Why is that?” he says. “One of the reasons is they simply don't have the ability to physically get to a healthcare provider. They can't get out of their homes because there may not be a ramp on the house. They can't get down the sidewalk because the sidewalks in their neighborhood are broken up. They can't get on the bus because they can't get to the bus.”
Those who are able to get to their doctor’s office, however, face additional barriers to care. They’re presented with other challenges around insurance and accommodation. The issues compound one another in a system that greatly needs improvement, Frieden argues.
“These are realities that the general public is not aware of,” he says. “There are many, many places in the United States where people with disabilities are still the forgotten minority. And that is unfortunate.”
This marginalization profoundly affects people’s physical health, mental wellness, and overall quality of life. What could help level the playing field and protect the quality of life for all people is an inclusive culture with equal access and quality of care for people with disabilities.
How you can be more inclusive—and make a difference
Disability inclusion involves promoting practices and policies and removing barriers—literally and figuratively—that limit people’s abilities to achieve equity in all areas of life, according to the CDC. It aims to help disabled people by:
- Getting non-discriminatory and fair treatment
- Making universally designed products, communications, and physical environments for adaptable use
- Making reasonable accommodations by modifying items, procedures, and systems, such as braille, large print, or audio books for people with visual impairments
But all people can practice inclusive behavior and habits in their everyday lives, as well.
The first step to cultivating a more inclusive environment and making sure everyone’s voices are heard, Frieden says, is simply to acknowledge people with disabilities.
“[People] must acknowledge that there is diversity among the disability population,” he explains. “People with disabilities represent every culture, every ethnicity, every gender preference, every gender, every language, every religion. We represent the whole realm of human existence.”
People can be more inclusive by changing the way they perceive and engage with those who are disabled. For example, Taylor points out that that people shouldn’t view her family any differently, and they shouldn’t be afraid to talk to her son simply because of his disability. “It starts with just saying ‘hi,’” she says. “It starts with those Sesame Street principles of just being kind.”
Teaching children about disabilities and encouraging empathy and kindness is also critical to creating a more inclusive culture that stops bullying. Children with various disabilities, including physical, developmental, intellectual, emotional, and sensory, are more vulnerable to bullying than their abled peers, according to the U.S. Department of Health and Human Services. This can lead to depression, anxiety, isolation, and other mental health issues.
“We need to teach our kids and people around us to have a more inclusive mindset, to be kind, to accept people regardless of their achievement,” she says. “It starts at the earliest ages, teaching your kids that it's okay to play with somebody with disabilities, that they have a lot to learn, and that they're people just like you.”
“[Disability] affects everyone,” Taylor adds. “We’re all united.”
