Angel Heaven Lee

Good morning,

I want to start with something simple but powerful. No one understands the impact of a system better than the people who live inside it every day.

For far too long, disability policy, programs, and services have been built about us, but not with us. Decisions are often made by people with good intentions, yet without a real understanding of what daily life with a disability actually looks like.

Lived experience is not just a personal story. It is expertise.

As a person with multiple disabilities, I navigate accessibility, healthcare, employment, transportation, and public spaces constantly. I don’t have to imagine where systems fall short. I encounter those gaps every day, when a building isn’t accessible, when benefits don’t reflect the real cost of living, or when policies ignore the realities of the people they affect.

And sometimes those decisions are made far away from the communities they impact.

Policies about healthcare, about education. Policies about bodily autonomy, about employment and economic opportunity.

All of these shape the lives of disabled people, whether disability is mentioned in the policy or not. When disabled voices are missing from those conversations, the result is systems that work on paper but fail in practice.

But when self-advocates are included early and meaningfully, something different happens.

Solutions become stronger because they are grounded in real life. Accessibility becomes proactive instead of reactive. Independence becomes the goal, not an afterthought.

This is not about excluding policymakers, professionals, or organizations. It is about partnership.

It is about recognizing that disabled people are not just service recipients.

We are experts in our own lives. True inclusion means more than inviting someone to the table for a photo. It means listening when feedback is uncomfortable. It means making space for lived experience to shape decisions before policies are written, not after harm has already happened.

So my call to action is simple.

If you hold power in government, organizations, or institutions, commit to including disabled people in the decisions that affect our lives.

If you are an advocate, keep showing up and using your voice. Because nothing about us, without us, is not just a slogan. It is the foundation of meaningful change. Lived experience is expertise!

Thank you.

Angel Heaven Lee