Kickin' It with Kimberly: Stop Acting Like You Know Better

Friend,

Let’s talk about one of my all-time top pet peeves. You’ve heard me say it before (probably more than once), but apparently I need to say it louder and with more jazz hands:
Lawmakers who think they know everything but don’t actually listen to the people impacted.

Yep, it’s happening again. Right now, Congress is playing a dangerous game of “We Know Best” while debating policies that could gut Medicaid—a program that’s not just a lifeline, but the literal reason many disabled people are alive, independent, and part of their communities.

Instead of pulling up a chair and listening to us, they’re pushing through proposals that ignore real input, silence real voices, and steamroll over lived experience.

Here’s the issue—they’re telling us it’s about “saving money” or “encouraging work.” But let me tell you, when you live in the real world, it’s messier. And scarier. And potentially deadly.

Medicaid is not just health insurance.
It’s access to personal care, therapies, job supports, and dignity. It’s the difference between living in your own home and being forced into an institution. It’s the reason people can get out of bed, go to school, go to work, or simply survive another day.

Cutting services or adding impossible work requirements won’t create independence. It’ll destroy it.

I know this because I’ve experienced it firsthand. I've lived it. This is my career. And because I listen to other disabled people.

I was on Medicaid. It paid for surgeries, therapies, and all the things that helped me survive and grow. Medicaid helped me get where I am today. I remember a time, though, throughout so many surgeries, that work was impossible. I’ve had private insurance for 20 years, but without Medicaid, I would never have made it this far.

Now my son, who’s adopted and has a disability, is on Medicaid too. His disability limits service options in our state (that’s another story), but at least he’s covered. And believe me, that coverage is everything.

Being disabled is expensive: assistive technology, wheelchairs, medications, therapies, adapted vans, time off work, in-home care, home … you name it.

And guess what? Private insurance? Doesn’t cover most of it. Not even close. Private insurance is much more restrictive and often denies or limits durable medical equipment, home health, community-based supports, personal care attendants, and many other services that are non-negotiable. Private insurance often treats disability as a risk factor or an exception. In contrast, Medicaid, despite being underfunded and politically attacked, was created to be a safety net for people with disabilities. That doesn't mean Medicaid is perfect (it’s not), but in terms of disability justice and access, private insurance often reinforces ableism through exclusion, denial, and inaccessibility.

We’ve been here before, and we’ve seen what happens when people actually listen. Remember the Affordable Care Act (ACA)? It wasn’t perfect, but because some disabled voices were actually at the table, it made a huge difference:

Pre-existing conditions? No longer a disqualifier.
Annual/lifetime limits? Gone.
Medicaid expansion? A saving grace for so many disabled people (not in some states, including South Carolina).
Accessible care models? Finally, a step forward.
The ACA didn’t just open doors—it knocked some down.

Before the ACA, disabled people couldn’t access even the most basic forms of care. You couldn’t get weighed because there weren’t accessible scales. You couldn’t get a mammogram because the machine didn’t accommodate wheelchair users. You couldn’t get a proper physical exam because the table didn’t lower, or the staff didn’t know how to transfer you safely. The message was loud and clear: "Your body doesn’t fit our system."

The ACA began to change that by mandating nondiscrimination, improving data collection, and requiring healthcare settings to become more accessible, not just physically, but also programmatically. It acknowledged that accessibility isn’t a luxury or a bonus; it’s a baseline requirement for equal care. That step alone was monumental.

But now? Now we’re watching politicians on all sides try to tear it apart. Republicans, Democrats, Independents—it doesn’t matter the label, because across the board, they’re too often fighting each other instead of fighting for us. The gridlock, the power games, the constant blame-shifting, it’s exhausting. And while they play politics, we pay the price.

Because they don’t know what it’s like to fight every day for basic care. They’ve never had to weigh whether to pay rent or refill a prescription. And too many of them refuse to listen, no matter what party they belong to.

And it’s not just healthcare. Education decisions are being made right now, without students with disabilities, their families, or disability-led orgs even being asked. Just a bunch of people sitting in big rooms with no clue what it’s like to actually navigate the system they’re trying to “fix.”

It’s a tale as old as time:
Talk about us.
Make rules for us.
Fund systems around us.
But never with us.

And here’s why: when non-disabled people picture disability, they often think “tragedy” or “burden”, not “leader,” “expert,” or “game-changer.”
That mindset? It creates broken systems. It fuels low expectations. It silences powerful voices.

We’re not here asking for special treatment. We’re asking to be included. To have a say. To be heard, especially when decisions directly affect our lives.

We’ve shown what happens when you invest in the disability community: better outcomes, stronger systems, more innovation for everyone.

So if you’ve got power, this is your invite:
Stop assuming. Start asking. Actually listen.

We’ve got the answers. We just need you to care enough to hear them.

Challenge Time:

If you’re not directly impacted by disability, here’s your to-do list for the week:
• Share this post or another written by a disabled person.
• Ask your lawmakers: “Did disabled people have a say in this?”
• Don’t just invite us to your table. Make space. Let us speak.

And if you are part of the disability community? Don’t let up.
Your voice is powerful. Your experience is expertise. And together, we’re louder, stronger, and trust me, way more effective.

Let’s keep kicking.
And make sure they can’t ignore us.
Disabled people aren't going anywhere.

- Kimberly Tissot, President and CEO, Able South Carolina

Kimberly is a white woman with shoulder length blonde hair with bangs. She is wearing brown rounded rim glasses, gold teardrop earrings, and gold necklace with a red shirt, black blazer, black pants, and gray ballet flat. She has one leg and uses crutches to assist her as she stands on a sidewalk in front of greenery, smiling for the camera.

Messages from our CEO:
Kickin' It with Kimberly

It’s essential to us that we keep you well-informed about current issues and barriers affecting people with disabilities. Our CEO, Kimberly Tissot, recognizes that you are at the heart of our efforts to promote disability rights, justice, and freedoms. Letters will be written to you, our key supporters, about the injustices we uncover and the solutions we can offer as a disability-led organization.