Pity Doesn't Equal Awareness: On Disabled Storytelling & the Price of Integrity

I have been watching our community get told who it is by people who have never lived inside it. And I have stayed quiet long enough.

Recently, I watched a craniofacial organization appear in mainstream media and offer the world a familiar story: disabled people as objects of sympathy, as tragedies in need of fixing, as inspirational backdrops for the comfort of non-disabled viewers. It was framed as awareness. It was not awareness. It was the oldest story in the book, dressed up in new packaging.

I felt a rage I recognized immediately. Because I have stood inside that machine. I know exactly what it costs to resist it — and I know what it costs not to.

So I want to tell you what happened when I appeared on a nationally syndicated television show in 2023. Not the version they aired. The version that actually happened.

What They Didn’t Show

I walked into that experience as an emerging doctoral scholar — a Black disabled woman at the beginning of a PhD journey centered on Black disabled women’s narratives, health equity, and the frameworks of Black feminist theory and crip feminism of color. I had spent years doing interior work: unpacking internalized ableism, building community investment, receiving media training that taught me precisely what exploitation looks like when it arrives dressed as opportunity.

I also walked in having just had surgery on my ear. My body was still healing. I was navigating the emotional and physical weight of that while simultaneously being asked to perform, to open up, to be compelling for a camera. That context matters — because the pity narrative is never more tempting than when your body is tired and someone is handing you a script that promises applause if you will just agree to be broken.

When they met me, they encountered something that apparently caught them off guard: an educated Black disabled woman who knew her story, understood its value, and was not available to be flattened into a two-dimensional narrative of suffering and survival.

That didn’t stop them from trying.

At some point, the questioning stopped being about my story and started being about what they needed me to be. What started as genuine curiosity became an excavation.

They were looking for what they expected: a sad, broken woman who wanted to be fixed so she could finally be loved. The narrative they kept pushing was that I had this surgery so I could get a date.

My stepfather, who traveled with me, came back to the hotel that night and told my mother and me how uncomfortable it had gotten — how producers kept probing him, trying to get him to hand them a pity narrative. Something they could use.

My mother spent that entire process in active battle with producers. Every time they called me abnormal. Every time they framed my body as something that needed to be corrected. Every time their language reduced me to a problem waiting to be solved, she was there — pushing back, flagging the harm, demanding better. She fought battles I did not have the emotional or physical capacity to fight for myself.

That is its own form of advocacy. That is what it looks like when a Black mother protects her child’s dignity in rooms that were never built for either of them.

The Silence That Followed

When my episode aired, it was — to be honest — a double-edged sword. It was one of the most viewed episodes of that season. And the silence that followed was one of the loudest things I have ever experienced.

I went to my mother and told her I had expected more — more applause, more recognition, more response from people who said they cared about this community. And she looked at me and said something that sent chills down my spine.

“Ladybug, had you gone on that show as a pitiful little Black girl with a sad story, there would have been a parade of applause. But you didn’t. You showed your strength — and that’s not what they wanted, nor what they were expecting.”

— My mother

I have been sitting with those words ever since.

Giving into the pity narrative may earn applause — but it costs the storyteller their dignity. And once you hand that over, you rarely get it back.

I want to be clear: that television experience was imperfect in more ways than I can count. I learned an enormous amount about the machinery of media, about who gets to tell our stories and for whose benefit, and about what it means to walk into a room as a rare thing. I did not get everything right. But I understood something foundational going in — that whatever appeared on that screen would be a reflection of an entire community. People who had already been reduced, already been stared at, already been told their bodies were the problem. I was not willing to add to that harm, even when the reward for doing so would have been loud and immediate.

I paid the cost of servant leadership in that experience. I would pay it again.

On “Awareness” and Who It Actually Serves

In disability studies and disability justice frameworks, we have long understood that visibility is not the same as liberation. Narrative sovereignty — the right of disabled people to define, control, and tell their own stories — is not a nicety. It is a precondition for dignity.

When organizations present disabled people to the public through a pity lens, they may believe they are building awareness. What they are actually doing is reinforcing the very structures that harm us: the medical model of disability that locates the problem in our bodies rather than in systems; the charity model that positions disabled people as passive recipients rather than agents; and the cultural scripts that have historically reduced us to inspiration porn or objects of curiosity.

Awareness that does not center the dignity of the people it claims to represent is not awareness. It is performance. And the craniofacial community — like every disabled community — deserves better than performance.

What Ethical Disabled Storytelling Actually Looks Like

For every media professional, organizational leader, advocate, or community member who will one day hold a microphone near someone’s story, here is what I know:

1. NARRATIVE SOVEREIGNTY IS NON-NEGOTIABLE

Disabled people are the authors of their own stories. Your role as a media professional or organizational representative is to amplify, not to author. If the story you want to tell requires the subject to be smaller than they are, the problem is the story — not the person.

2. PITY IS NOT A PROXY FOR AWARENESS

The most common defense of pity-based narratives in disability media is that they work. And that defense is not entirely wrong.

Medical moms have gone on morning television, shared their children’s diagnoses, posted surgical photos, and invited the public into their most vulnerable moments — and the bills got paid. The equipment got funded. The surgery happened. The GoFundMe closed. In a system that routinely denies disabled people access to the care they need, the pity narrative has functioned as a workaround. A survival strategy. A tax on dignity that some families have decided, reasonably, is worth paying.

And I want to be transparent about something, because this piece demands honesty: that was also my motivation. I went on that show, in part, because I needed the procedure covered. I understood the transaction. I made the choice. I sat in that chair knowing, on some level, what being on national television might cost me in terms of how my story would be told — and I went anyway, because the cost of not going was a surgery I could not otherwise afford.

I am telling you this because the critique I am making here is not one I am making from the outside. I have been inside this system. I have paid its toll. And I still believe what I am about to say.

I am not here to judge those families. Or myself.

What I am here to say is that the transaction has a cost that extends beyond the individual telling the story — and that cost lands on the entire community.

When a child is presented to the public as a tragedy to be fixed, that image doesn’t disappear after the fundraiser closes. It circulates. It becomes the reference point for how medical professionals, educators, employers, and strangers understand what a craniofacial condition means. It shapes what the next child in that waiting room is expected to feel about themselves. It reinforces the medical model of disability — the belief that the problem lives in the body, not in the systems that fail to accommodate it — and it makes that model harder to dismantle for everyone who comes after.

The question is not whether pity-based storytelling ever produces a benefit. Sometimes it does. The question is: who bears the cost of that benefit, and did they consent to bearing it?

A parent has the right to tell their own story. They do not have the right to tell their child’s story in ways that will follow that child for a lifetime — into classrooms, job interviews, relationships, and the mirror — without the child’s understanding of what they are agreeing to.

And organizations that build their awareness strategies on the suffering of community members — even when those members have consented — have an obligation to ask themselves a harder question: are we raising awareness of the community’s humanity, or are we raising funds on the spectacle of their pain? Those are not the same thing. And the fact that one of them sometimes results in a paid surgery bill does not make them the same thing.

Awareness that requires disabled people to perform their suffering for non-disabled comfort is not awareness. It is a transaction. And the community deserves to know the difference — and to demand better, even when better is harder, even when the applause is elsewhere.

3. THE BODY HAS CONTEXT

Disabled people showing up to tell their stories are often doing so through pain, fatigue, recovery, and grief that the camera does not capture. Honor that. Do not weaponize vulnerability. Do not confuse access to someone’s story with ownership of it.

4. WATCH YOUR LANGUAGE

Words like “abnormal,” “fixed,” “overcoming,” and “inspiring” encode deficit-based frameworks that harm disabled people. Ask your subjects what language they use for themselves — and use it.

5. YOU ARE NOT JUST TELLING ONE PERSON’S STORY

Every representation of a disabled person in media carries the weight of a community. The story you tell today will shape what the next person sitting in that chair is asked to be. Build something worth inheriting.

6. INTEGRITY IS DOING THE RIGHT THING WHEN THE APPLAUSE IS ELSEWHERE

Pity gets the parade. Dignity gets the silence. Choose dignity anyway — for yourself, and for every person coming behind you.

I am a Black disabled woman, a doctoral scholar, a community member, and a storyteller. I have stood in front of cameras and been asked to make myself small. I have refused. And I will keep refusing — not because it is easy, but because the alternative is a cost I am not willing to pass on to the next generation of this community.

Reclaim your story. Protect your narrative. Know your worth before you walk in the room.

And if the world applauds you less for showing up whole — let that silence tell you everything you need to know.

— Rasheera Dopson, MPH · PhD student, Interdisciplinary Health and Disability Studies · Northern Arizona University