Celebrating Independence

Independence is the buzzword for July. And in addition to celebrating with hot dogs and fireworks this weekend, I suggest we also reflect on independence as it relates to people with disabilities.

Actor and activist Steve Way eloquently writes about this in a recent Substack article, reminding us that: "Independence is not doing things alone. Independence is having agency over the help you receive."

When we take away the funding and supports that help people with disabilities, we create dependence. When we adequately support people to live in their homes and communities, and to develop lives of passion and purpose, we build independence. 

Steve offers a front-row perspective on why this matters. On living with disabilities and fighting to maintain independence by protecting and preserving the government and community supports that help sustain independence. I learn something new every time he shares his thoughts. You can follow him here.

His latest post reminded me that this July marks the one year anniversary of H.R.1, or the Big Beautiful Bill Act. Keeping up with what it means for families like mine is hard and depressing. Reading Steve's take on things helps me make sense of the madness. To know when to contact my representatives. To know when to care.

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Here's what professor, writer, and "excellence researcher" Brad Stulberg has to say about caring:

"Caring is cool.

You are not going to be the best anything—including the best version of yourself—with an attitude of nonchalance.

The best athletes care deeply.
The best artists care deeply.
The best leaders care deeply.
The best coaches care deeply.
The best teachers care deeply.
The best doctors care deeply.
The best writers care deeply.
The best scientists care deeply.
The best parents care deeply.

Caring deeply is the cost of admission to a big and textured life."

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I've talked about these topics in my recent speaking engagements and workshops with parents and professionals who care for and support young people with disabilities. My presentations include this slide, which illustrates how building resilience can help us care for and strengthen our kids, ourselves, and our communities. Wanted to share it here, in case picturing things this ways helps you somehow.