When We Lose Caregivers, We All Lose

They Didn’t Just Care for Me. They Became Family.

There are moments when advocacy feels bigger than legislation, bigger than headlines, and bigger than politics.

This is one of those moments.

For those who don’t know me, I live with Limb-Girdle Muscular Dystrophy. I rely on caregivers every single day, for getting out of bed, transferring with a Hoyer lift, showering, getting dressed, preparing meals, going to medical appointments, and simply living my life with dignity and independence.

Without caregivers, I cannot live independently.

Over the years, I’ve worked with many caregivers from different backgrounds, but one thing I’ve consistently experienced is the incredible dedication of many Haitian caregivers. They have shown up for me on holidays, during snowstorms, early mornings, late nights, and weekends. They’ve worked long hours without complaining, often juggling multiple jobs just to support themselves and their families.

Some have shared pieces of their stories with me, stories of sacrifice, of leaving loved ones behind, and of coming to the United States hoping for safety and opportunity.

When I think about the possibility of these individuals being forced to leave, I don’t see a political issue first.

I see people.

I see caregivers who have lifted me when I couldn’t lift myself.

I see people who helped preserve my independence.

I see friends.

I see families living with fear and uncertainty.

And my heart breaks.

I’ve also seen how difficult it has become to find reliable caregivers. Across Massachusetts and throughout the country, there is already a caregiving workforce shortage. Every time we lose dedicated caregivers, people with disabilities, older adults, and families are the ones who feel the impact immediately.

This isn’t just about one community.

This is about the future of caregiving in America.

This is about whether people like me can continue living safely in our homes instead of being forced into institutions because there simply aren’t enough caregivers available.

I know conversations about immigration are complex. There are different opinions, different experiences, and different ideas about what policies should look like. I respect that.

But I also believe we cannot ignore the human side of these decisions.

When policies change, they don’t just affect statistics.

They affect the caregiver helping someone get out of bed tomorrow morning.

They affect the child waiting for their parent to come home from work.

They affect the elderly person who depends on a familiar face every day.

They affect disabled people like me whose independence depends on having someone there.

I’ve witnessed firsthand the resilience, compassion, and commitment of so many Haitian caregivers. Their work has changed my life.

To every Haitian caregiver who has cared for me, encouraged me, laughed with me, and treated me with dignity!!!!

Thank you.

You have made a difference that cannot be measured.

As the founder of Girls Chronically Rock, I advocate every day for stronger caregiving systems because I know what happens when they fail. We need policies that recognize the value of caregivers, support the disability community, and remember that behind every headline is a human being whose life matters.

I hope we can lead with compassion.

Because at the end of the day, this isn’t just about immigration.

It’s about humanity.