Our Children Have Been Robbed (by Erin Gabriel)
Erin’s three children: Collin, Abby, and Bridget. Collin has short blond hair and wears sunglasses and a gray t-shirt. Abby and Bridget have their blond hair pulled back, and each wears a purple t-shirt with pink lettering that says, “Sister of the Year.”
My name is Erin Gabriel. I live in Beaver County in Western Pennsylvania with my husband and three children, Collin, Bridget, and Abby.
My youngest daughter Abby is a beautiful, fun, mischievous ten-year-old who loves playing with her big sister and brother, going to the theater, exploring the outdoors, and, of course, all things Disney.
Abby is Deaf-blind, autistic, and has a rare progressive neurological syndrome affecting multiple organ systems. She is considered high risk should she contract Covid-19.
Today marks 189 days since Abby has been inside any building that is not our home. It has been 193 days since she has been to her beloved school. Summer vacations, playdates, outings, travel plans to visit grandparents--they’ve all been canceled.
Last month, we had to make the difficult decision to officially pull Abby out of her school--the place that’s become her community over the last eight years--and homeschool her. She, like many children with disabilities, simply cannot access a virtual education, and it's not safe to send her back into a school building while this virus is spreading. But Abby misses her school and her friends.
In normal times, ongoing speech, occupational, and physical therapy help Abby to keep the progress she has made learning to walk, eat and swallow, and communicate. But, with Covid-19, those therapies have all come to a halt. It’s just not safe.
Abby’s syndrome is progressive. She will eventually lose much of what she has gained, and we are already watching some of that play out. Her seizures will return and intensify. Her muscles will weaken and her spine stiffen. As her disease progresses, we know that she will need more intensive medical care. Attending school and receiving in-person therapies is one way that we try to stave off that potential progression, and I worry about what she stands to lose by not being there right now.
She has been robbed. Robbed by an Administration that not only failed to act, but blatantly lied about what they knew. Robbed by a President more concerned with his own poll numbers than with the numbers of infections and deaths in our communities.
And while the President is forcing schools to open without regard to safety, and even encouraging my neighbors to skip the mask, he is also in court trying to repeal the Affordable Care Act (ACA): Trying to take health care away from millions of Americans in the midst of a pandemic.
All three of my children have disabilities. They rely on the protections of the ACA to access care. Like any child, my kids also have health needs outside of their disabilities. For example, kids fall off their bike and break bones, or sometimes they catch a baseball with their face instead of their glove.
Life happens. Even during a pandemic.
When my son Collin was 12, he had sudden and severe abdominal pain. So bad, in fact, that we took him to the emergency room at Children’s Hospital. As a disabled child, he had both private insurance and Medicaid, so I didn’t need to hesitate and contemplate the cost of the visit. As it turned out, Collin had appendicitis. If we had waited another day, his appendix would have burst, a much more dangerous situation. He was admitted and his appendix removed.
Later that week when he developed complications, we went back to the emergency room, worrying only about my son’s health and not about how we would pay for groceries afterwards. Without Medicaid, we would have hesitated, and far too many families are forced to do just that--they second guess themselves, worried about the cost, and delay treatment.
In this time of great uncertainty, our families--all of our families--need the certainty that they can access health care without losing their home. Instead of offering that certainty, the President is in court trying to rip health care away from millions.
Our kids are missing out on so much of their childhood right now. And instead of acting to mitigate this virus in our communities, instead of showing true leadership, the Administration is trying to force schools open without adequate safety measures, all so President Trump can perpetuate a myth of normalcy in the midst of deadly chaos.
This was all preventable. It didn’t have to be this way. Our children deserve so much better.
Erin Gabriel is Director of Advocacy for Little Lobbyists, and State Chapter Leader for Little Lobbyists Pennsylvania. These remarks have been adapted from those Erin gave at the Protect Our Care Virtual Bus Tour on September 15, 2020.