As A Special Needs Mom, I'm Terrified Of Trump

I feel as though I've been in shock since I woke up on the morning of November 9. As we move closer and closer to the inauguration of Donald Trump as president, I've found it incredibly difficult to come to terms with the realization that my fellow citizens elected a man I feel is wholly unsuited in experience, temperament, and ability to the most powerful office in the world. I am stunned from a number of perspectives, both as a woman who has been the victim of sexual assault and as the friend and family member of people who feel their very right to feel at home in this country has been challenged.

But the upcoming inauguration of this man who was able to tap into the deep undercurrent of American distain for difference disturbs me most as a mother raising a child with a life-long disability. Meryl Streep’s Golden Globes speech brought the image of our soon-to-be president mocking the reporter Serge Kovaleski back to the forefront of our national conversation. I, too, have not been able to get this image out of my mind. For his part, Trump maintains he "did not know" what Kovaleski looked like and that he would " never, ever mock a person with disabilities" because he spends "millions a year, or millions of dollars on ramps, and get rid of the stairs and different kinds of elevators all over."

It isn’t so much the action of Trump mocking Kovaleski that's worthy of our continued discussion. Rather, his doing so is a sign of something deeper than the facts of this action, no matter how many times Trump and his supporters try to revise the story. His actions illuminate the fact that our country is on path to make a mockery of the (already) far-too-skimpy systems in place to support Americans with disabilities, when what we need are real changes in government policy regarding healthcare, caregiving support, legal protections, and special education for people with disabilities under this new administration.

Given everything she’s had to put up with already in her life, the idea of Esmé being mocked by anyone makes me see red — it is, however, a reality I know we'll likely face again and again, especially at the hands of our new president.

Now, let me tell you a few things about my daughter — the person who makes discussions of disabilities intensely personal for me. My daughter Esmé is a beautiful 6-year-old child who has four genetic mutations, which cause conditions that make her life exponentially more difficult than most other 6 year olds. Esmé struggles to do things most of us take for granted: she does not eat by mouth, or stand independently, or speak. She's experienced cardiac arrest, hundreds of seizures, and months of hospital stays in her short life. She also reads, and giggles, snuggles, and keeps trying to do the things that seem impossible for her. She is part of the beautiful and vibrant variety of human life — something I believe is a gift we should all celebrate. Hers is a life we all benefit from supporting, even if she needs more support than the rest of us. In fact, in the six years of being Esmé’s mother, I've come to believe our humanity — as individuals, communities, and as a society — is directly linked to the ways we value the lives of people who need the kind of support my daughter needs.

Given everything she’s had to put up with already in her life, the idea of Esmé being mocked by anyone makes me see red — it is, however, a reality I know we'll likely face again and again, especially at the hands of our new president. I am already not unaccustomed to the unfeeling stares she can attract, the blatant disregard of her needs, and, at times, outright discrimination she faces. However, the idea of seeing President-elect Trump mocking someone who might as well be my daughter makes me want to scream at the top of my lungs until the Electoral College agrees to change their votes.

But it is worth asking: Why, precisely, does such a thing bother me so deeply? Why does it make the pit of my stomach sink and force me to question my choice to raise my child in this country? It isn’t just because of Trump, who is about to become the most powerful man in the world, has done something most people I know would discipline a 6-year-old for doing. It's about a culture lacking compassion, accountability, and honesty for its behaviors. It's about the likelihood that Donald Trump will enter the presidency and make good on his promises to gut the already thin services and safeguards that protect Esmé and other individuals like her. It's about the fact that we're setting a dangerous precedent — one where people can and should bully their way through conversations that deserve nuance and compassion.

Some of my friends laugh off Trump's election as a "joke of a lesson this country deserves to learn," even though it's one that will be learned on my daughter’s back.

We look to our leaders to show us who we are and who we should be. And in 2017 it's no longer shocking to me that the same people who'd argue against a woman's right to choose would also shame a mother arguing for her disabled daughter’s right to healthcare, education, and appropriate caregiving. It's not at all startling that I have a Facebook friend who now responds to any of my impassioned comments about the political climate and my fears for my daughter’s health and safety with the “haha” emoticon. His actions pointedly remind me that not only that he is watching, but that he's also mocking my concern for her and for our future. Some of my friends laugh off Trump's election as a "joke of a lesson this country deserves to learn," even though it's one that will be learned on my daughter’s back.

Additionally, I find it wholly unsurprising that Jeff Sessions, the man Trump proposed as his Attorney General and who would ultimately be responsible for upholding Free and Appropriate Public Education (FAPE), has made multiple disparaging remarks about the legal safeguards in place to avoid discrimination against people with disabilities and special education. I find it horribly unsurprising that soon the reassurances of the Affordable Care Act —namely that my daughter will be able to remain on our private insurance longer and that she won't be denied coverage due to her pre-existing conditions — are promised to be repealed. I'm no longer shocked by the prospect of widespread cuts to Medicaid likely to cause loss of services to many Americans, including middle-class families, like mine, raising children with disabilities.

I am a mother who loves her daughter just as she is. I feel blessed every single day to be her mom. I didn’t know how sick she would be when I was pregnant, but I can say in all honesty, knowing everything I know now, I would still choose her. Over and over, I would choose to be Esmé’s mom.

These are the kind of realities and behaviors that should shock me, but in 2017, they've become normal. And all of it has been legitimized by the man who just won the presidency by insulting as many people as possible, by selling falsehoods as truths, by a vicious othering of the people who will be harmed by the deeds of his administration.

I am a mother who loves her daughter just as she is. I feel blessed every single day to be her mom. I didn’t know how sick she would be when I was pregnant, but I can say in all honesty, knowing everything I know now, I would still choose her. Over and over, I would choose to be Esmé’s mom.

Esmé’s prescription formula cost more than our monthly mortgage payment — and every month when I saw the bill I said a little thank you that we lived in one of the few states in the United States that required insurance coverage for life-sustaining prescription formula.

To be clear, I would not choose the path our culture’s relationship with medical fragility and disability has laid out in front of us. It has not been an easy path for many, many reasons no one could help, but also for many reasons we all could. The act of keeping my daughter alive during the first years of her life was, quite literally, a 24-hour-a-day job — a job where life and death decisions had to be made again and again. I was often sleeping so little that I questioned my ability to safely drive, let alone make a decision about how best to respond as my child turned blue in my arms.

After Esmé’s birth, I walked away from the career I’d been building in academia to be with her full-time. At this point she was seizing weekly and in and out of the hospital almost monthly. There was no way to support her properly and maintain a two-income household. So I stopped working and my husband re-doubled his dedication to his work in order to ensure there were no doubts about the security of his job. It was a clear-headed choice we made, knowing he had to guarantee our health insurance because Esmé would likely be denied coverage for her pre-existing conditions if we ever had to switch providers. While our private insurance offered very good coverage, it was not constructed around coverage for severe chronic illness. Esmé was visiting the doctors so often and was on so many medications we often paid hundreds of dollars a week in co-pays. And we regularly received medical bills we had to fight our insurance on — bills that listed five and six figures on them. Esmé’s prescription formula cost more than our monthly mortgage payment — and every month when I saw the bill I said a little thank you that we lived in one of the few states in the United States that required insurance coverage for life-sustaining prescription formula.

I could see the ease with which a family like mine could buckle under the weight of all of this without help. And we had a lot going for us: a solidly middle class footing to start from, helpful family near by, good insurance, the ability to absorb becoming a one-income household. And as hard as we struggled with it all, I found myself wondering constantly how other people could make it work without these supports.

Fortunately, we live in a state that offers a good Medicaid waiver program. And once the almost year-long application process was complete, we were able to begin Esmé’s supplemental Medicaid coverage through the New York State Care at Home Waiver. This coverage does not replace our private insurance, instead it fills the gap between what private insurance would cover and what people with permanent disabilities need. So, it pays the copays on doctor’s visits and medications, as well as nursing care and medical equipment not covered by typical private health insurance. This reduced a substantial financial burden that could easily caused a middle-class family to slip below the poverty line. It also dramatically improved my daughter’s health, giving her in-home nursing care to help identify sickness early, keep her healthier, and avoid hospital stays — which directly corresponds to better health outcomes as well as reduced care costs long-term. And, it improved my stress levels and ability to sleep, making me a better caregiver and, frankly, allowed me to become contributing citizen. I completed my doctorate, started a foundation, and began a career as a writer.

Things are easier now with Esmé’s health, partially because we've settled into the pace of a life that is very different than I expected. But they are also easier because Esmé’s health has been improved in no small amount due to the safeguards we have in place, like the preventative care she receives through nursing.

And while her health has stabilized, our concerns have shifted from just keeping her healthy, to providing her with a life that is worthy of her. At 6 years old, Esmé has yet to attend public Kindergarten because our school district, in violation of her legal rights, has not provided a nurse to accompany her to school. We regularly have caregiving and nursing gaps because the rates of pay for these services are not competitive enough to consistently attract and maintain good caregivers. As I plan for what I hope will be her very long life, my family has to discuss the details of special-needs trusts to allow her money designated for her care. I know we'll never be able to consider living in most states in this country because of the shocking lack of states with good and accessible Medicaid waiver programs.

These are the very real repercussions of the last election for my daughter and other disabled Americans, and they all somehow crystalize around the image of Trump acting out that almost universally recognizable scene: the one where he stands on stage, scores of adorers behind him, and openly mocks a man's disability.

I know, for a fact, that I will spend the entirety of Esmé’s life seeking solutions to help keep her safe and thriving. This means fighting for the things so many of us take for granted. I know I would've had to do this without cuts to Medicaid and without the repeal of the Affordable Care Act because the protections that are currently in place for individuals like my daughter are, undeniably, insufficient, but the election of Donald Trump to the office of president, together with the Republican held House and Senate, assuming they do as they say they will, threatens to make all of those battles more difficult and more intense.

What they propose has the ability directly and quickly harm my child’s health, safety, and quality of life. Individuals like my daughter go through life fighting battles most of us cannot fully understand. They fight for their ability to breathe, to control their bodies, to communicate, to maintain their health. And now, our country has chosen to make those already impossible battles somehow even more difficult.

These are the very real repercussions of the last election for my daughter and other disabled Americans, and they all somehow crystalize around the image of Trump acting out that almost universally recognizable scene: the one where he stands on stage, scores of adorers behind him, and openly mocks a man's disability. Yet it's not just about that. It's about the fact that our country just elected a man for whom nothing for disabled Americans is safe: Not their rights to proper education, to adequate medical care, or to legal protection. And certainly not their right to be valued.