LIVING IN FEAR
THE QUIET TERROR OF LOSING OUR BENEFITS
Photo: A man lies in bed in a dark room, with a worried expression on his face. A wheelchair sits in the corner, and a Hoyer lift stands beside him. The words "LIVING IN FEAR" hang overhead.
Every morning I wake up with the same fear clawing at my chest:
What if today is the day they take it all away?
For millions of us with disabilities, government benefits aren't "free handouts."
They are lifelines. Lifelines that keep us fed, clothed, housed, and, most importantly, alive.
But under the current administration, that lifeline feels more like a noose tightening with every budget cut, every cruel policy, and every whisper of “reform.”
Let’s be clear.
We’ve seen this before.
Republicans talk about “wasteful spending” and “entitlement reform,” but what they really mean is cutting Social Security, slashing Medicaid, and making it harder for disabled Americans to survive.
We are not just numbers in a spreadsheet.
We are people. Mothers. Veterans. Children. Elders. Americans.
And yet we live every day with a target on our backs.
This fear is not theoretical.
It’s real.
It shows up in my mailbox with the latest "re-determination" form from Social Security.
It shows up in my email when Medicaid tells me my managed care provider is changing again.
It shows up on my phone when friends call me crying because their home health aide hours have been cut, or because the waitlist for a life-saving program just got longer. Again.
Let me tell you about my life.
I live with cerebral palsy. I use a wheelchair full time, and I depend on a ceiling lift and a Hoyer lift to transfer from my bed to the bathroom and into my wheelchair.
I live with my elderly mother who has severe arthritis and can’t assist me physically.
That means I rely on a home health aide every single day.
But getting reliable help has become a nightmare.
During the COVID pandemic, my aide disappeared, and I went months without anyone.
A friend of my mom's tried to help, but she couldn't operate the lift because of its height.
I had to depend on neighbors, church members, and family to get by.
Do you know what it feels like to wake up and not know if someone will be there to help you out of bed?
The worst part?
They act like we should be grateful for whatever scraps we’re given.
As if surviving on $943 a month under SSI is a privilege.
I am lucky to have a Master’s degree.
I am lucky to have my mind and my voice.
But I am still a disabled man in a wheelchair, living in a system that punishes people for needing help.
We are told to be invisible unless we are inspirational.
And we are punished if we speak too loudly.
Well, I'm speaking now.
This isn’t just about fear.
It’s about injustice.
It's about policy decisions that are killing people slowly and silently.
If you’re not disabled, if you’re not poor, you might not notice.
But we do.
We feel it every single day.
So here’s what I’m asking:
If you care about justice, then fight with us.
📞 Call your representatives.
🗳️ Demand protection for SSI, SSDI, and Medicaid.
🗳️ Vote like someone’s life depends on it.
Because it does.
No one should have to live in fear of losing the only support that lets them live at all.
I love my country. I know this is not what its supposed to be. I know what it can be.
The treatment of those who are and/or will be suffering from trump’s inhumane, hateful treatment of the elderly, disabled, and poor is nothing short of death by proxy. My outrage is at a level I never felt before. I am of an age under which I may need to be taken care of before long and I have been considering my options which include some pretty dark scenarios. My only other option is to sell and move out of the country which is a daunting prospect.