This is hard for me to write. I don’t like talking about controversial topics. I’ve spent most of my life keeping my views to myself, trying to fit in, trying to be who I was expected to be. I’ve always wanted to be liked, to be accepted. But today, I need to speak my truth—even if it makes me uncomfortable.
In my last post, I wrote about the rapid unraveling of disability protections. It’s a topic that hits close to home, and my relationship with it is more complicated than you might think.
I grew up in a predominantly white, middle-class neighborhood. I had opportunities if I worked hard. I didn’t know anyone with a disability. I was politically conservative because that’s just how things were. When people talked about government waste and lower taxes, I agreed. It sounded reasonable, and I didn’t question it. I was uneducated and, frankly, naive - unable to really make my own assessment.
Then Conner was born, and everything changed. We learned he had a disability, and suddenly, the world looked different. Yet, my views didn’t change right away. I was still conservative in my thinking, and I believed that if I could just take control, everything would be fine.
When private insurance denied Conner’s cochlear implant surgery, I was angry. My immediate reaction was to think, “Well, if I have control over my own money, I’ll just pay for the best services myself.” And that’s what we did. We also opted out of federal, state, and local services because I believed I could handle it on my own.
But looking back, I see that I was in denial. I genuinely believed we’d find a cure for Usher syndrome within 10 years. I believed we wouldn’t need social services - that our son would not become blind. I thought Todd and I could do it all through Hear See Hope - find a cure. I was fueled by hope and sheer determination.
Then later reality hit. Hard. I realized that no matter how much money we had or how hard we worked, there were things we simply couldn’t do on our own. But by then, I was already burnt out from trying. I had convinced myself that controlling our finances and social services would make life better. But guess what? We can’t do everything ourselves. I can’t do everything myself.
I learned the hard way that it’s easy to dismiss the importance of social services, diversity, equity, and inclusion—until you or someone you love needs them. I worked tirelessly, even getting my Ph.D. in the process, but I reached a point where I had to admit that we need these government services. And today, we rely on them.
My views have changed, and they’ve changed drastically. Not because of politics but because of life—because of love, struggle, and the harsh realization that none of us can go at it alone.
I don’t care who you voted for, but I do ask that you try to understand why so many of us are hurting right now. These policy changes are impacting real people in very real ways—like my family. I haven’t slept in a month, and I know many other families who feel the same way.
This isn’t just political rhetoric. It’s about people. It’s about survival.
What You Can Do to Make a Difference
If this resonates with you, and you’re wondering how to help, here are a few ways you can take action:
1. Educate Yourself and Others: Learn about the issues impacting vulnerable communities. Knowledge is power, and understanding the real-world implications helps build empathy and drive informed advocacy.
2. Contact Your Representatives: Reach out to your local, state, and federal representatives. Let them know how important protections and social services are and why they must be preserved. Your voice matters, and elected officials do listen.
3. Support Advocacy Organizations: Consider supporting organizations that are fighting for equity, social justice, and human rights. Whether through donations, volunteering, or simply amplifying their message, your support makes a difference.
4. Have Conversations: Talk to friends and family members about the importance of social protections and equity. Sharing stories and experiences can change minds and build understanding.
This isn’t just about disability protections or political ideologies—it’s about people. It’s about ensuring every human being has the opportunity to live with dignity and access the services they need to thrive.
Thank you for reading and for caring. It means more than you know.
I’m sharing my story because maybe, just maybe, it will help someone understand. And if it does, then this vulnerability will have been worth it.
I love you boys more than anything in this world. I love being your mom.
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