What I Mean When I Say I'm PDA

What I Mean When I Say I’m PDA

When I say I’m PDA, I am describing the nervous system I came to inhabit through biology, experience, adaptation, and survival. I am describing the way my body learned the world—and the ways it learned to protect my autonomy within it.

Yes, I am describing disability. I am describing possibility. I am describing freedom. And, increasingly, I am describing love—not soft love, not acquiescent love, not the kind of love that asks us to become smaller, quieter, easier, or more digestible so other people can tolerate us. I mean love as a radical commitment to the truth of who we are. To ourselves. Love that refuses to foot the bill for other people’s demands by handing over pieces of myself. Love that says: I will not abandon myself simply because abandoning myself would make everyone else more comfortable.

That is what I mean when I say I’m PDA.

People often think a diagnosis tells you what is wrong with someone. The best diagnoses tell you what happened, or how we came to be. They tell the story of a nervous system—shaped by inheritance and experience, by safety and threat, by love and fear.

Mine learned something very early: power mattered. Powerlessness, or anything that felt like it, was dangerous. Not because I wanted to be difficult. Because somewhere inside me, selfhood became synonymous with safety.

I never wanted to be easy. I did not envision myself as the perfect daughter, the simple person, the uncomplicated child. This matters, because there is a version of the neurodivergent story that goes something like: I spent my childhood desperately trying to be good. Quiet. Compliant. Easy.

That ain’t it.

I never valued easy. Just like I never truly valued thin. I valued love and belonging, despite a protected self who would never have dared to admit how much. And far be it from me, at the age those concepts first took root, to parse the differential between the thing itself and what the thing seemed to purchase.

Children are extraordinary pattern-makers. We notice what earns warmth, what restores connection, what calms adults—humor at exactly the right moment can break through a lot of anger—what opens doors, and what gets them slammed in your face. We mistake the currency for the treasure. Love becomes confused with approval. Belonging becomes confused with performance. Safety becomes confused with self-abandonment.

None of us invent those equations. We inherit them.

But if I’m honest, I didn’t even crave acceptance. Acceptance was never the destination. It was infrastructure.

What I craved was room. Room to think, to argue, to imagine. Room to chase an idea farther than everyone else was willing to take it. I craved debate and principle. I craved rhetoric. I craved that electric moment when an argument stops being theoretical and begins threatening the boundaries of what everyone else has accepted as reality.

I wanted to extrapolate beyond the point of return into a world where what was merely possible became what is.

Acceptance mattered because belonging gave me the ability to exercise power. Not power over people. Power to inhabit myself and still be accepted. Power to participate in changing the world.

Looking back, I don’t think I was ever searching for certainty. I was searching for possibility.

One of the best grades I ever earned was an A-minus.

It was high school—the only year of high school when I was finally earning genuinely good grades. In hindsight, that was probably no coincidence; it was also a year when I was given more autonomy. For the first time, an all-A semester was within reach.

The class was taught by the Head of School, a man I did and still do deeply admire. It was a debate and social issues class, and I was given a talking-to about not debating fairly. In the end, he gave me a choice: I could earn an A for debating according to the rules, or an A-minus for debating to win—on issues I believed actually mattered.

I chose the A-minus.

I threw an all-A semester to the wind. Not recklessly. Deliberately.

Because somehow, even then, that A-minus said more about who I was, who I wanted to become, and what I believed than the perfect transcript ever could. I cared about the grade. I cared deeply. But I cared more about the argument. The class structure and I had different end goals: I cared more about persuasion than performance, more about principle than compliance, more about proving the rules should change than proving I knew how to follow the rules.

And frankly, I had no respect for the opposition. Marriage is between a man and a woman, women don’t have the right to determine what happens with their bodies, affirmative action is unfair to white people? Nobody has time for that.

Looking back, I wasn’t choosing between an A and an A-minus. I was choosing between two ways of moving through the world. One rewarded mastery of the existing rules. The other demanded enough courage to ask whether the rules themselves deserved the final word.

I have been choosing that A-minus ever since: marriage equality, reproductive justice, queer liberation, neurodiversity, PDA, psychotherapy.

Again and again, I have found myself standing in that same classroom. Again and again, I have chosen the A-minus. I have built an entire life out of choosing that A-minus.

Not because I enjoy being contrarian. Not because I reject authority for its own sake when authority has earned its place. But because I have always believed there is something sacred about following an idea beyond the point where everyone else stops. If it is worth fighting over, it is worth fighting for. And truthfully, I hate fighting—so if I am fighting, it is because it matters.

The world does not simply exist. We create it iteratively, in every breath and every moment. What is impossible becomes imaginable, what is imaginable becomes possible, and what is possible becomes what is.

That impulse has shaped my politics, my work, my relationships, my parenting, and my understanding of myself. Long before I knew the letters P-D-A, I knew this: I would rather risk approval than betray conviction.

And perhaps that, too, was my nervous system protecting something essential.

People hear PDA and imagine refusal: a child who won’t put on shoes, an adult who can’t answer an email, someone resisting ordinary expectations. Sometimes that’s true.

Sometimes my disability is a toothbrush.

Sometimes it’s a glass of water.

But there is another irony. People imagine PDA as a life of saying no. Mine has often looked like saying yes—yes to another project, another movement, another committee, another client, another impossible idea that somehow feels entirely achievable.

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For the life of me, I have never reliably understood the difference between doing something and doing too much of something.

That line has always been invisible until I have already crossed it, gone another mile, and fallen off a cliff into a lake of what the hell did I do to my life? And oh has it been worth it.

“Too much of something is bad enough
But somethings coming over me to make me wonder
Too much of nothing is just as tough
I need to know the way to feel to keep me satisfied”
- Spice Girls 1997

I don’t experience my capacity as a steadily draining battery. I experience it as possibility. Until suddenly I don’t. By then I am so committed to things I value that I have to tango with myself, parsing how to get more done than my nervous system is wired to do—more, frankly, than anyone’s nervous system is wired to do.

My nervous system rarely whispers, You’re approaching your limit. It waits until I have sailed gloriously past it, jumping up and down, thrilled by all the possibility and accomplishment.

The yes was never the problem. The problem was that I had no map for where enough ended and too much began. And that is difficult to know when the mere act of getting a glass of water can feel impossible.

I am still learning that limits are not failures of imagination. I am still learning how to find them. And frankly, there is nothing particularly fun about finding your limits. There is no endorphin rush in saying, I don’t think I can do that.

That is dynamic disability.

My capability does not erase my most disabling tasks. I am not required to choose which version of me is real. They are all me.

This is one of the great failures of the stories we tell about disability: we want consistency. We want predictability. We want people to fit neatly into reassuring categories—capable or disabled, high functioning or low functioning, independent or dependent.

My nervous system has never respected those categories.

I can keynote a conference, hold complexity for hundreds of people, teach clinicians, write until midnight, parent three children, coauthor a paper, design a training, run a business, and dream about what comes next.

I can also be unable to go downstairs to get food or a glass of water. Or start a project long enough before it’s due date to not create the feeling of danger.

Neither is pretending. Neither is more authentic. Both are true. Both belong.

I have spent too much of my life trying to convince people that my difficult days were real because they had already seen my extraordinary ones—and just as much time trying to convince people my extraordinary ones were real after growing up surrounded by adults who wanted me to do better and couldn’t understand why I just wouldn’t. Truthfully, I didn’t get it either.

Both things can exist at once. That is not a contradiction. That is complexity.

I do not love every part of being PDA. There are days I grieve the ease with which other people seem to move through a world that often feels abrasive against my skin. Self-love does not require me to pretend those things don’t hurt. It asks something much harder: whether I will remain in relationship with myself while they hurt.

Yes. Always.

I deserve that after a lifetime of (often self) abandonment. Everyone does.

There is a difference between romanticizing disability and loving disabled people—including ourselves. I do not have to call pain beautiful. I do not have to pretend overwhelm is some secret gift. But I can refuse the lie that pain makes me less worthy of tenderness. I can refuse to divide myself into the parts I celebrate and the parts I merely tolerate.

I am disabled. Not metaphorically. Not only politically. Actually.

And I am no longer interested in postponing my love for myself until I become less so.

People often assume that because I value selfhood so fiercely, I must value independence above all else. It is one of the greatest misunderstandings of my life.

I have never experienced myself as an isolated self. I am context-embedded. Context-shaped. Context-bound. My nervous system is always mapping relationships, always asking what is happening between people rather than only what is happening inside a single person.

As a therapist, I don’t see symptoms; I see adaptations. As an advocate, I don’t see individual failures; I see systems. As a writer, I don’t see stories detached from culture; I see histories living inside bodies.

And in relationships, I see the we before I see the me.

That has always been true.

The same nervous system people often imagine as radically individualistic has always been profoundly relational. I don’t want independence. I want interdependence. There is a profound difference.

Autonomy has never meant isolation to me. Autonomy is what makes relationship ethical. Without autonomy there is no consent. Without consent there is no trust. Without trust there is no intimacy. Without intimacy there is only proximity.

I don’t want a we built through compliance, maintained through obligation, or sustained because leaving feels impossible. I want a we built through interdependence and an ongoing choice to keep choosing one another. A we renewed because each person remains free enough to leave and free enough to stay.

Perhaps this is why every movement I have ever devoted myself to has felt like the same movement wearing different clothes. Each has asked the same question: What becomes possible when people no longer have to betray themselves in order to belong?

I have never understood liberation as something that belongs only to the individual. Liberation is relational. I don’t dream only about free individuals. I dream about free communities, free families, free partnerships, free classrooms, free therapy rooms, free children. Not free from responsibility. Free from having to disappear in order to deserve love.

Coming to understand myself as PDA reminded me of coming out as queer. Not because they are the same experience. They aren’t. But because there comes a moment when explanation gives way to ownership, when you stop asking whether other people agree with your reality and stop auditioning for legitimacy.

Queer as in: I no longer need your permission to love who I love.

PDA as in: I no longer need your permission to trust my own nervous system.

There is an extraordinary peace that comes from ending the debate inside yourself. The outside world may continue arguing. Mine doesn’t have to.

I still love debate. God, I love debate. I still love the exhilarating collision of ideas. I still believe minds can change. But I no longer debate my own existence. And too, I love connection just as much.

Some questions deserve curiosity. Others deserve rest. We all deserve the intimacy of knowing and being known.

My humanity is no longer one of the questions. And being known and knowing is a requirement for my commitment and capacity.

For years, I misunderstood the source of my own power. I thought it came from accomplishment, persuasion, collecting enough credentials that no one could dismiss me, becoming indispensable, exceptional, useful—maybe even from finally being accepted.

But acceptance was never the source of my power. It was only one of the places I had learned to look for it.

The power was already there: in the teenager who chose the A-minus, in the queer kid who refused to believe love should be rationed, in the organizer who believed marriage could be reimagined (and also that perhaps we shouldn’t base society on the prioritization of partnership), in the advocate who believed reproductive freedom belonged to every body. I smiled through embattled congressional investigations. I watched colleagues endure bombings. I stood behind what I believe in anyway. And it was there in the therapist who kept asking whether compliance was really the measure of healing, and whether we subscribe to enforced rules created by someone who isn’t in our interactions and isn’t here for our healing.

The power was never the applause.

The power was the willingness to imagine a world before other people could see it.

I think that is what my nervous system has always been trying to protect. Not comfort. Not control. Possibility. Possibility makes me feral.

The possibility that relationships can exist without domination. That children can grow without learning to abandon themselves. That disabled people do not have to earn dignity by becoming inspirational. That therapy can be built on curiosity instead of compliance. That a we is consistently more powerful than a me as long as the we is inclusive of everyone embedded in it.

When I follow my nervous system now, I no longer ask only whether it is afraid. Fear has never been a reliable indicator. Sometimes it is, and fear deserves compassion. But sometimes what I am feeling is not fear at all. Sometimes it is the unmistakable sensation that something about the situation asks me to betray myself.

My nervous system has spent an entire lifetime refusing that bargain.

For almost a lifetime I experienced that refusal as pathology. I have also known, at least some of the time, that it has been wisdom.

I don’t think PDA has made me morally superior. It hasn’t. Sometimes my nervous system gets it wrong. Sometimes I resist when I don’t need to. Sometimes fear dresses itself up as principle. Sometimes I disappoint people I love. Sometimes I disappoint myself. PDA does not allow one to evade humanity.

This is not a manifesto for always trusting every instinct. It is an invitation to stop assuming our instincts are guilty until proven innocent. To become curious. To ask not only, What is wrong with this response? but also, What is this response trying to protect?

That question has changed my clinical work, my parenting, my relationships, and most of all, the relationship I have with myself.

Because love, I’ve discovered, is not agreement. It is not admiration. It is not endless confidence. It is not pretending pain doesn’t hurt.

Love is refusing abandonment. Especially your own.

It is staying. Remaining in relationship with yourself when your body becomes difficult, when your capacity disappears, when your disability is visible and when it isn’t, when you have disappointed someone and when you have disappointed yourself. When everything gets just a little, or perhaps a lot, unruly.

Love is looking at your own nervous system—not with resignation, not with shame, not even with pride, but with profound curiosity. With respect. With tenderness.

It is saying: You’ve been trying to protect me all this time. Let’s figure this out together.

So when I say I am PDA, I am not asking you to understand me. I am inviting you to imagine something.

Imagine a world where autonomy is not mistaken for defiance. Where interdependence is not confused with self-erasure. Where disability does not have to justify itself. Where children are not taught that belonging must be purchased with obedience. Where relationships are built not through obligation but through the ongoing freedom to keep choosing one another.

Imagine a world where no one has to disappear in order to be loved.

I am disabled. I am dynamic. I am relational. I am principled. I am sometimes spectacularly capable and sometimes profoundly incapacitated. I still question the premise. I usually question the premise beneath the premise. I will almost certainly choose the A-minus again—not because I need to be right, but because I still believe there are truths worth following beyond the point where certainty ends.

Love has never asked me to become someone else.

Fear has.

Institutions have.

Power has.

Shame has.

Love never has.

If my nervous system has taught me anything, it is this: no one should have to disappear in order to deserve love.

Least of all ourselves.