After the presidential election in November, I went into a deep, all-consuming state of rage. Why? I was furious so many Americans chose to put a morally bankrupt person back into the White House. At the end of Trump’s last term on January 6, there was a fleeting moment of unity in Congress. Republicans agreed it had gone too far. They had been hiding for hours from the attack on the Capitol, but they came out of the bunkers, came together late into the evening, and did their duty. I remember thinking – this has to be it. They are finally seeing how divided we are and it can’t go on like this. The joke was on me.
A few weeks later, they would all abandon their principals and vote no on impeachment. Now, Sienna is paying for that mistake.
Five years ago, I was in Harrisburg for an in-person advocacy class, funded by tax dollars. There were about 20 to 25 parent advocates from across all areas of Pennsylvania—with different religious and political beliefs, living in different communities, parenting children with varying disabilities, but none of those differences mattered because we were united in wanting what’s best for our children.
The class was taught by powerhouse parent advocates who had stood where we were standing. Each session involved a weekend stay out of town, and real relationships were built. They were rooted in a foundation of purpose. Our first class focused on the history of advocacy—on the parents who fought in the 1970s for the rights we often take for granted today. We studied disability as a civil rights issue. I went home and watched a documentary that left me stunned: I can’t believe how devalued people with disabilities were back then, I remember thinking.
Just five years ago, before COVID shut the world down—we could put our political differences aside. We had our last in person session the weekend before everything changed. What I gained from this experience changed our trajectory. I learned how complicated and intimidating these systems are. I learned parents always want what’s best for their kids—even if the system makes it impossible. I was given tools to find resources for the myriad of obstacles we could face along this journey.
This Was Not Government Waste
Today, some people would call programs like this “government waste.” But for me? It changed everything. It gave me the tools to navigate the most complicated systems in America—systems that are now being weaponized on podcasts and talk shows, turned into sound bites designed to make families like mine sound like parasites.
But I’ve paid my taxes all my life. And when Sienna was born, I was never more grateful to be an American citizen—or a Pennsylvanian. Opportunities like this were lifelines. They gave us direction, purpose, and leadership skills. They taught us to support new moms entering the disability world—the ones who feel like they’re drowning. I was that mom once.
The history of the Disability Movement gave me so much gratitude for the parents and self advocates who fought. Because of their work, we had access to the supports needed to give Sienna a meaningful life. Human beings deserve that.
And now, here I am watching that decades-long progress unravel in a matter of months. DEI initiatives are being erased along with words like advocacy, advocate, and activism. You can erase the words but you can’t erase the progress, no matter what you break along the way. Sure, you can dismantle the Department of Education and scatter its functions across different government agencies. But you can’t convince me it will serve kids better that way. Because I’ve lived this.
Take Sienna’s school—it’s in danger of being closed. The district is using data that’s wildly inaccurate. They want to claim not enough children occupy the building to justify its maintenance. In order to do that, they are using numbers that claim 6 special education students should fit in a janitorial closet. Insane, right? If they actually placed students in the rooms they claim to be using, it would violate her civil rights. But until that school closure is official, I have no legal standing. I called the Office for Civil Rights (OCR) in Philadelphia and filed a complaint, and they told me we had to wait until the decision is final. The district knows this too. They have 90 days from the time they announce it to make it official and once it is official, there is no undoing the damage. Last week, the Office of Civil Rights in Philadelphia was closed. It’s astounding to me that an office that is completely backed up with casework and discrimination claims is now closed and being incorrectly labeled as waste. What is even more astounding is the amount of people that believe it.
Where Will I Go When Her Rights Are Inevitably Violated Again?
Because they will be. Sienna’s rights have already been violated—in school, in church, in summer camps, in extracurriculars. Do you know how many families in our community cannot find a daycare willing to accommodate our children? They don’t have to take them, and trust me they don’t. OCR is the only place we have to turn, because not everyone can afford to pay an attorney. From our experience, the threat of a claim with OCR has been enough to get people to do the right thing. Discrimination has increased under this administration, because the rhetoric coming from our President devalues people with disabilities. It has emboldened people, and now our most vulnerable citizens do not have a place to call, because they have been abandoned by their country.
You know what will probably be prioritized now? “White tears” over sitting next to a trans kid. That’s what this administration thinks civil rights look like.
School Choice is a lie.
School choice sounds lovely—until you realize it’s code for leaving kids behind. Private schools aren’t required to take students with disabilities. They can and do reject them regularly. I should know. Sienna’s kindergarten experience was a failed experiment in that regard. In Texas, I just watched a little girl with cerebral palsy testify that no private school would admit her. But hey, now every family gets $10,000 in vouchers! If your kid has special needs, you get $11,500. As if $1,500 more a year even begins to cover the cost of a paraeducator or therapies. As if that guaranteed acceptance or access!
This isn’t about choice—it’s about privilege. It’s a tuition discount for people already affording private school. Meanwhile, public schools like Sienna’s—underfunded and under siege—collapse. This is coming from someone who has another child in private school. Last week, we got a letter from the public district encouraging us to look into vouchers in our state. Keep in mind, my daughter already attends private school. I was just given a pass to use tax dollars for a discount. Talk about government waste? Sienna’s school is on the brink of closing because it is underfunded, yet here is a letter telling me to take those tax dollars. Is this who we are now? We take from the poor to pad the pockets of the rich.
This country and the people in it are leaving us behind.
Summer camps don’t have to take kids like Sienna. Neither do sports teams. At 8 years-old, Sienna is expected to only participate in the “special” version of everything. These programs aren’t always accessible or local. Churches are supposed to accommodate her, but they don’t. Sienna is making her First Communion, and I have been advised to buy a $75 visual sacrament kit because nothing adaptive exists through our church. Nothing for free anyway.
These systems fail us every day. I used to think Moms who shared these experiences were alarmist or difficult. Surely, they had not established good relationships in their community. I am a reasonable person. People will do the right thing. We have so much support.
I was wrong. People only have a tolerance for so much hardship.
I had a friend tell me once, as a parent, you only get one annual complaint to discuss with administration at a school. The first time she mentioned it to me our kids were still in preschool.
Last year, she mentioned it again. I am here to tell you that parents of kids with disabilities need more than one per year. I know I have been labeled as difficult because of this in her mind. I know I have been labeled by many people in my life as sensitive and hard to please, but the truth is – I am just asking for the things everyone else is able to easily access for their children.
2025 has been one of the most isolating touch points on this journey. This is the age things get harder – for Sienna and our family. Everything is a fight. Everything has to be explained or justified. School, sports, church, activities, accommodations, therapies, medical appointments, services that she needs – it literally never ends. People don’t want to hear about it. They want to continue wearing their rose colored glasses. They want to continue on the conveyor belt, leaving us to the side, struggling to find our way forward on a path that is inaccessible.
The disability community is under attack by this administration.
These cuts aren’t numbers on a spreadsheet. They are a direct attack on families like mine. They threaten not just programs and protections—but the very idea that our children deserve to belong in this country. I knew it would be bad when he was re-elected, but I prayed that he was not lying about Project 2025. But as he proves time and again – he is a liar.
Sienna stands to lose civil rights protections, critical funding her school district needs to support her, medical assistance through Medicaid, NIH research funding to treat Alzheimer’s when she and so many others with Down syndrome face that critical time (as early as in their 30s), waiver support, and DEI initiatives that give her and so many others OPPORTUNITY FOR CONSIDERATION in a job that typically wouldn’t even give them a chance to interview.
And parents like me – I guess we will just have to unite in our efforts to advocate because teaching us how to support our children in a complicated system is now considered WASTE. Who knows what systems will survive this nightmare?
I’ve never felt more abandoned by my country, and even some people in my life, than I do today. I am utterly heartbroken in every way.
We won’t give up. We will keep fighting. I just wish everything was not so hard. I wish more people were willing to listen to the lived experiences of their fellow Americans over Elon Musk and Donald Trump.
Empathy is now looked at as weakness, so I don’t see how this gets any better. On a journey that is already hard, things just got exponentially more difficult and lonely.
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