And Why Being “Nice” Hasn’t Fixed Disability Systems
Unapologetic Advocacy exists because I heard the same sentence far too often from families and self-advocates who are doing nothing wrong:
“I’m sorry if I’m being mean.”
They say it when standing up for themselves.
They say it when protecting a loved one.
They say it when asking for the support they need.
Somewhere along the way, we have made people feel like defending, or standing up on behalf of someone, requires an apology. As if speaking up for what is right is a personal flaw instead of the right thing to do. As if the harm being done to them matters less than the discomfort of the people being challenged.
Why have we made people feel like they need to apologize to bullies?
Personally I have never understood this idea. As an advocate, and even in leadership roles, I have been told that the act of pushing back and standing my ground was unprofessional. That asking for clarification was defiant. That insisting on accountability was unnecessary. The “act of arguing, defending, or standing up on behalf of someone”, is the definition of advocacy. I was told I should apologize.
I negotiated. I proposed solutions. I documented patterns.
What I would not do was apologize for advocating.
And I won’t ask anyone else to either.
I am not sorry for holding systems accountable. I am not sorry for defending people who are being ignored, dismissed, or harmed. I don’t want families or self-advocates to feel guilty for standing up when something isn’t right, when needs aren’t being met, or when they are simply trying to be heard and understood.
That is where Unapologetic Advocacy comes from.
Not because this movement is about being unfiltered for the sake of being loud, but because people have been conditioned to feel shame for doing exactly what advocacy requires. Being unapologetic means refusing to internalize that guilt. It means rejecting the idea that compliance equals professionalism, or that doing what you’re told equals safety.
At the same time, this movement is not about becoming bullies ourselves.
Unapologetic Advocacy does not mean hiding behind the word “advocacy” to excuse harm, cruelty, or ego-driven behavior. We are not here to replicate the very power imbalances that have caused so much damage. Accountability applies to us too.
This movement is grounded in empathy, transparency, and responsibility. We practice the Platinum Rule: treating people the way they want to be treated, meeting them where they are, and honoring different communication styles, needs, and experiences. That requires listening as much as speaking, and humility alongside conviction.
Unapologetic does not mean reckless.
It means intentional.
So who is this movement for?
Unapologetic Advocacy centers round people with intellectual and developmental disabilities and their families navigating Tennessee’s waiver services. That includes people trying to get into a waiver, people already in one, people who love their waiver but have concerns, people who see its potential, and people who believe the system is failing them entirely.
All of those experiences matter.
This movement rejects the state’s habit of pitting families and needs against each other; crisis versus prevention, one diagnosis versus another, one need over another. People should not have to fall apart to be taken seriously. Those who are not in crisis still need support to stay out of crisis, and services must be able to adapt as needs change over time.
This is not about serving only one “acceptable” narrative. It is about acknowledging the full range of lived experiences within the system and refusing to let them be dismissed.
Do we all have to agree on everything? No.
We won’t. And that’s okay.
But for this movement to work, we do have to agree on shared values: respect, accountability, and a refusal to shame one another. Judgment, infighting, and agenda-pushing will not be tolerated here. This community is already subjected to enough of that by the very systems meant to support it.
Let’s be honest, this is hard. No one truly understands it like someone else living it. Someone else solution may not be yours. Their coping strategies may look different. Their experience is not your experience. Empathy goes a long way, and we are stronger together than we are fractured.
It’s easy for outsiders to say, “It’s not personal.”
But when this is your life, day in and day out, everything feels personal.
We may not be able to prevent that. But we can acknowledge it. We can create space for people to share their stories, frustration, anger, and grief without being shamed, silenced, or told to calm down. And we can stop making people feel like they need to apologize for standing up for themselves or someone they love.
Because being “nice” hasn’t fixed the system.
For years, Tennessee’s waiver services have been delayed, reduced, or denied outright until a crisis forces a response. Supports would appear only when situations become unsafe, now we are seeing that narrative change.. Over time, the most complex or difficult situations are becoming labeled “outside the scope” of the waiver. Families reach breaking points. Harm becomes unavoidable.
This isn’t miscommunication. It’s a pattern.
Tennessee’s waiver system operates on complexity, fragmentation, and silence. Families are expected to understand policies they were never clearly taught, navigate agencies that rarely communicate with one another, and advocate calmly while essential supports are lost or better yet not do anything or do it all. Calls go unanswered. Decisions come without explanation. Timelines are vague. Requests for clarification are dismissed as misunderstandings.
When families push back, they’re labeled difficult and risk retaliation.
When they document what’s happening, they’re told they’re wrong or they don’t understand.
When harm occurs, responsibility is shifted back onto them and passed to another entity.
People are led to believe that Silence keeps things moving. Persistence is punished. Compliance is rewarded, but the reward is rarely meaningful support. At best, families receive a bandage for a bullet hole.
This is not collaboration. It is control.
Waiver services are not extras. They are what allow people to live safely at home, participate in their communities, and avoid unnecessary institutionalization. When the system fails, the consequences are immediate and deeply personal: lost supports, compromised safety, burnout, fear, and preventable harm.
The problem is not that individuals within the system don’t care.
The problem is that the system itself is not accountable.
It relies on confusion to discourage questions, power imbalances to dismiss lived experience, and a culture that rewards quiet compliance over truth. Advocacy is encouraged, but only if it is polite, patient, and non-disruptive and on their side
And being “nice” hasn’t made the system transparent or responsive.
This movement is about plain-language transparency, clear expectations, and real accountability. It is about systems responding without retaliation and treating lived experience as evidence, not inconvenience.
When systems fail one person, it’s a tragedy.
When they fail many, it’s a policy choice.
We exist to make those failures visible and impossible to ignore
Your experience matters. Your voice matters. And you should not have to carry this alone.
That is why this movement exists.
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