President Trump’s youngest guest at Tuesday’s State of the Union address—Ellie, a two-year-old born at 21 weeks—was used to show that “every child is a miracle of life,” as he said. He credited her medical team and her parents’ prayers for Ellie’s progress, referring to her as “strong” and “healthy.”
But I can assure you, a good medical team and prayers aren’t always enough.
My child was born and treated at one of the best children’s hospitals in the nation, and they will still live with a permanent disability that requires lifelong care. The services and support that children like mine need—long after birth—have been repeatedly threatened by Trump.
While delivering what some on the far right are calling the “most pro-life speech” in the history of the State of the Union, Trump called on the U.S. Congress to increase funding for neonatal research by $50 million for “America’s youngest patients,” and to pass legislation banning later abortion care.
It isn’t the first time Trump has used the State of the Union to call for anti-choice restrictions. Last year, the president’s State of the Union address included a request for Congress to “prohibit the late-term abortion of children who can feel pain in the mother’s womb,” following the passage of a New York state law that legalized abortion after 24 weeks’ gestation if the pregnancy isn’t viable or threatens the pregnant person’s life or health. Even though the American College of Obstetrics and Gynecology has stated that a fetus isn’t able to feel pain until late in the third trimester, the concept of “fetal pain” is still used by anti-choice lawmakers to restrict access to abortion care.
As much as anti-choice activists want to be seen as pro-life, they continue to show just how pro-birth they are instead. Trump’s motivation behind sharing Ellie’s story isn’t that she was born and survived, but that she’s able-bodied. Ellie is “exceeding milestones,” according to a White House press release sent out the day of the State of the Union address.
But not every child born prematurely (or with disabilities) will have the same journey as Ellie, and while she may be exceeding milestones now, her journey has not been without delays. The doctor who treated Ellie at the time of her birth said parents need to be prepared for their child to potentially have some form of disability when they are born that early. I imagine this information didn’t fit Trump’s narrative.
I’m not sure if Trump understands how ableist the language he uses to describe Ellie is. Considering he publicly mocked a disabled reporter, there’s no reason to give him benefit of the doubt. When he described Ellie as healthy and strong, he implies that’s a favorable outcome. While it’s great she has made progress, it raises the question: Does a disabled person have to present as able-bodied and “strong” in order to become even a blip on Trump’s radar?
Increased research to support children born prematurely is absolutely needed. But because of Trump’s past efforts to significantly cut disability funding, I’m left feeling concerned for children—and adults—who have lifelong needs associated with disabilities.
Trump wants to use this opportunity to restrict access to abortion care as he does the bidding of the anti-choice movement. But the abortion I had in 2016 has allowed me to continue providing my child with the care they need—financially, physically, and emotionally. Because while anti-choice rhetoric often paints abortion as anti-disability, I made my decision with my child’s condition in mind. I wanted to give them the best life possible.
The president has proven he is no ally to the disabled community. In 2017, his proposed budget included significant cuts to services that millions of disabled people need to survive. Trump filed a budget proposal in 2019 from Secretary of Education Betsy DeVos that would have stripped $18 million in funding allocated toward the Special Olympics; his budget request that year also included a $51 million cut to an initiative focused on autism and other developmental disorders.
After an uproar, the administration restored the funding for the Special Olympics within days. And only months later, in a pattern true to the president’s inconsistent temperament, Trump signed a bill allocating $1.8 billion towards research and intervention for autistic people. But that doesn’t erase his many proposals that, according to disability advocates, put the lives of disabled people at risk.
Trump’s fiscal year 2020 budget proposal included the following: gutting Medicaid to the tune of $1.5 trillion over the next decade, an $845 billion cut to Medicare over ten years, massive ten-year cuts to Social Security (including disability insurance), and cuts to independent living centers and respite care—a service many families depend on to care for their disabled children or other family members. The Trump budget would have taken away access for millions of people with disabilities who receive health care and community-based services under Medicaid by limiting the amount of federal dollars that programs receive.
My child survived their condition at birth, but it doesn’t come without struggles. They’ll attend hours of physical, occupational, and speech therapy every week for the rest of their life. They’ll use an augmentative and alternative communication device, receive regular check-ups from specialists, and undergo surgeries and other interventions for physiological and behavioral management. They will always be at risk of developing seizures at any given time, and the rate of complications when experiencing illness will always be heightened.
But my child was born and survived.
Based on its efforts to restrict abortion and slash funding for disability services, it’s clear the Trump administration values life only until we’re born, and only if we’re able-bodied.