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Why I Won't Let Fear of Trump Marginalizing People With Disabilities Overwhelm Me

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I knew one kid who had a disability growing up. One. His name was Brian, and he walked with a cane and talked with a slight slur. I didn’t know when I was 8, 9, 10 that he probably had cerebral palsy. We didn’t talk about diagnoses at that age. We talked about trading Garbage Pail Kids and jelly bracelets. Brian was in our classroom all day and learned the same as we did. He tripped and fell more often, but he refused help. He got up by himself and he often had a smile on his face. I remember thinking of him as a kind and determined person.

But I didn’t know anyone who had cognitive challenges and behavioral challenges. No one with Down syndrome or autism. Surely the incidence of Down syndrome and autism would have caused me to come across some person with those conditions in my formative years. I never did. You may not have either.

“We used to institutionalize kids like that.”

You’ve probably thought or heard that before. It’s true. We used to institutionalize kids with disabilities. That’s why I only knew one Brian.

The laws have changed to help create ways for people with disabilities to be more included and truly valued members of our society. With regard to education, IDEA requires public schools to provide a free and appropriate education to all children with disabilities. With regard to medical coverage, many severely disabled and medically complicated children – who would have been institutionalized 30 years ago – now qualify for state Medicaid waiver programs designed to help parents raise their children within their home and community.

I am not a person who is interested in politics by nature. My son, however, has forced me to research these issues that are front and center in our headlines. They directly affect him, our family, and our society as a whole.

I fear that with Betsy DeVos as Secretary of Education, many able-bodied children will opt out of public school, leaving less funding available to children with disabilities. She has refused to say whether or not all publicly funded schools will be required to abide by IDEA, a federal law. Consequently, my son may end up segregated from his peers who are more typical in their development, peers he so desperately needs. Right now, he is thriving in a public preschool classroom of kids with and without disabilities. He has good behavior modeled to him and is exposed to the same curriculum as the rest of the class. He is not progressing at the speed they are, but he has made – and will continue to make — great advances academically and socially. He needs to be included in our schools.

Trump’s proposal to offer block grants to states for Medicaid also worries me. I fear our state will choose to slash therapy and quality medical services for children like mine. Supplemental health care, respite care, medical equipment and home modifications would simply not be made available. The entitlement programs which were originally designed to help the members of our society who could not care for themselves have been diluted and traded for political favors over the years. Now it’s a mess left for family members to fund and resource alone.

A society will be judged on the basis of how it treats its weakest members.” – Pope John Paul II

This is true for the unborn and the elderly, the refugee and the orphan, and the disabled. The vulnerable among us are experiencing this crisis of our society.

I could become completely consumed by fear and anger over whether or not my child’s life will be valued because of his disabilities… About if and how he will be accepted and included within our community schools. About if or how we could handle the cost of his medical complications.

I don’t have the luxury of letting fear overwhelm me. I only have one voice – the voice that speaks for me and on behalf of my child. That’s why I blog, that’s why I call and email my state reps, and that’s why I will keep advocating for access to my son’s education and many medical therapies.

The outcomes of these issues are out of my control. All I can do is ask you – plead with you – to get to know someone like Brian, someone like my son. I only knew one Brian as a kid. Knowing him forced me to look beyond myself and understand true kindness and determination. Brian made an impact on me. I hope that one day my son will, with great dignity, be welcomed to do the same.

Editor’s note: This story reflects an individual’s experience and is not an endorsement from The Mighty. We believe in sharing a variety of perspectives from our community.

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Originally published: February 10, 2017
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