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Me, Myself, as Mommy: Utah throwing out social safety nets with no backups

By Meg Sanders - Special to the Standard-Examiner | May 17, 2024
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Stacy Bernal and her son, Hayden.
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Meg Sanders

July 1 brings a legislative change that will deeply affect people diagnosed with autism spectrum disorder (ASD) and other disabilities. Utah lawmakers and Gov. Spencer Cox signed to dismantle diversity, equity, and inclusion (DEI) programs at schools and institutions around the state. These programs leveled the playing field, allowing many of our ASD-diagnosed individuals to reach their full potential and experience success. How awful. Despite warnings and pleas from experts, educators, parents and individuals with diagnosed disabilities, lawmakers passed H.B. 261.

Most see DEI as a race or cultural issue, when in a state like Utah, where 1 in 4 will be diagnosed with ASD, it encompasses so much more than that. According to the Pew Research Center, Utah saw a 65% increase in students diagnosed with a learning disability in 2022. Families throughout the state know and love a person with a diagnosed disability, and DEI was once an avenue for help and advocacy as they went through the school system.

Stacy Bernal has become an outspoken advocate for children and adults with an ASD diagnosis as she supports her own son as he navigates a world set up for neurotypical individuals. “It was terrifying, having to now navigate this system that is completely different from everything that is traditional. Every idea you have about your child’s future, education, their social relationships, even with other kids, just goes out the window. I just had to figure out how to make things as good for him as I possibly could,” says Bernal.

Awesome Autistic Ogden, Bernal’s foundation, would throw a community fair focused on children with ASD. This gathering became a resource for parents like me, navigating this new world order, allowing us to embrace and celebrate the ASD diagnosis. Bernal took her advocacy even further, running for Ogden School District school board, which she’s served on since January 2023. Now, she’s running for Utah Senate against John Johnson, the lawmaker who initially proposed the elimination of DEI programs back in 2023. This is a head-to-head battle on so many issues, but none are as important as protecting our diverse, vulnerable and marginalized students. “We have to do better because people are slipping through the cracks. There are more resources when they (individuals with ASD) are younger. But when they age out of the public school system, they fall off a cliff,” explains Bernal.

The safety nets in place are more than an acronym of DEI; it’s actual people trying to sculpt a better future for themselves despite disabilities. Our neurodiverse children, injured veterans and LGBTQ+ are left to fend for themselves in a system set up by and for wealthy, white, cis men. This same group removed the nets at the bottom of the cliff, instead choosing to watch these people fall. After speaking at the recent legislative session, Bernal witnessed the testimonies of those in our community negatively impacted by the law set to take effect July 1. “We’re not necessarily as a state looking to improve things,” she says. “These policies that roll back DEI. They are going to create even more obstacles and challenges for families like ours.”

The rollback is happening regardless of this column, the stories or even the statistics. So what can be done for Utah families? My yard at home currently has two plastic Adirondack chairs with a slight crack in one of the rungs on the back. If I move in such a way, the crack splits, grabs a strip of skin and pinches. It’s the fastest way to get me back to mowing, instead of relaxing with my ice water. Time and again, I pester to throw those chairs in the trash, but my wise partner always says, “Don’t throw it away until you have something to replace it with.” Duct tape can save anything, so the chair stays in place and I simply adjust how I sit because I need somewhere to relax. If I throw away the chairs, we’ll have no place to sit in our yard. Lawmakers did not follow this policy. Instead, they threw away DEI with nothing to replace it. They didn’t add duct tape or adjust. There is nothing in place to ensure marginalized people — whether it be because of their race, culture, brain, physical body, lived experience or orientation — are offered resources. There is no repair or replace, just removal.

The lack of resources will hurt Utah families. The Autism After 21 Utah Project found nearly 2% of the population lives with ASD. This initiative is working to gather solid data on what ASD looks like across the state to then use to create effective resources for our communities. Proper resources will allow people to build skills, enter the workforce, and create a sustainable life for themselves and their families. The loss of DEI will make these processes take longer.

As for DEI critics, Bernal puts it best, saying, “The existence of DEI offices and DEI efforts isn’t harming people who don’t need it. You don’t need to buy into it, you don’t need to access it. But especially on our college campuses, you’re now pulling access to resources that many, many people rely on.”

I’ve got six years until my kid looks off the precipice of that cliff, nets shredded, no replacement nets being secured. He has to decide whether he’ll jump with the rest of the kids secured with a rope. If he wants a full life, his independence, he has to jump. Will the governor, legislators, educators, advocates and voters get the nets in place for him. “As a parent, as an advocate, as someone who’s in this space, I just want people to realize how this will impact someone that they love,” says Bernal. “Shift the mentality of the ways that it doesn’t impact you and think about the ways it will affect someone you love.” It’s just like hosting a party with all your loved ones but they have nowhere to sit because you threw out all your chairs.

Meg Sanders worked in broadcast journalism for over a decade but has since turned her life around to stay closer to home in Ogden. Her three children keep her indentured as a taxi driver, stylist and sanitation worker. In her free time, she likes to read, write, lift weights and go to concerts with her husband of 18 years.

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