What does it do to people to be constantly told that they “are deviating from the norm” or “have abnormal function of X” or “are lacking in Y”?

That question has been on my mind for a while. But why is it a problem? Surely this is just the way medical language sounds? Clinical. Neutral. Descriptive. But… is it really neutral? And what does it actually do to the person on the receiving end of it, year after year?

I recently read “Don’t mourn for us”, an essay by Jim Sinclair (also available as a PDF here). Jim Sinclair is an American autistic activist who has been a key contributor to reshaping our understanding of autism. The essay, written in 1993 and addressed to parents of autistic children, is one of the foundational texts of the neurodiversity movement. In it, Sinclair makes an, on the surface, simple argument: autism is not something that exists separately from the person, like a coat they could take off. Autism is woven into how a person thinks, perceives, communicates, and experiences the world. You cannot separate the autism from the person. There is no “normal child” hiding underneath, waiting to be rescued. This means that the tragedy that parents mourn is not autism itself, but the loss of the “normal child” they expected. And that expectation, Sinclair argues, is precisely the problem, because it means the child who actually exists, the autistic child, is being mourned as if they were already gone. As if they were not enough.

Reading it, I kept thinking about language. About the words we use when we talk about people whose minds or bodies work differently from the majority. Words like deficit. Disorder. Impairment. Abnormal. Lacking. Disease. Diagnosis. When someone is constantly defined primarily by what they cannot do, what they lack, what they deviate from, it does something to you. And that feeling doesn’t just stay in the doctor’s office. It follows you home. It gets internalized. It shapes how you see yourself, how you explain yourself to others, how much room you give yourself to simply exist as you are.

The neurodiversity framework is built on the idea that neurological variation is a natural and valuable part of human diversity, and not a collection of deficits to be corrected. This means that autism is not a disease or a tragedy but rather a different way of being human. It doesn’t mean pretending that everything is fine. But it starts from a different place: that the person is not the problem.

There is an important difference between acknowledging that someone faces real challenges and framing a person’s entire existence as a deviation from a standard they will never meet. The first can be compassionate and practical. The second can quietly erode a person’s sense of their own worth and legitimacy.

That shift matters more than it might seem. When you start from “this person is broken and needs fixing,” you end up with very different questions, interventions, and relationships than when you start from “this person has a different way of functioning. How can the world make more room for them, and what can we learn from each other?”

Jim Sinclair’s essay asks the parents of autistic children to grieve the expectations they had for their child and then to actually meet the child they have in a genuine way. It is, at its heart, a call to see people as they are rather than as a shadow of who they were supposed to or expected to be.

That call has stayed with me. Not just as an idea, but as a challenge: can I do that for myself?

It probably won’t surprise you that I believe this extends far beyond autism. Any time we reduce a person to their diagnosis, their limitations, their deviation from a norm, we risk losing them. We risk them losing themselves.

So what does it do to people, to be told over and over that they are lacking, abnormal, disordered?

I don’t think there’s one answer. Some people find ways to resist that narrative. Some build entirely new frameworks for understanding themselves. Some find community with others who share their experience, and in that community, find a different story.

But many carry the weight of that language for a very long time.

Which is why the words we choose, in medicine, in education, in everyday conversation, matter. Because language shapes how we relate to the world. And what we believe about people shapes how we treat them.

I have Parkinson’s. And almost every clinical description of the condition is built around absence and loss: dopamine deficiency, reduced motor control, impaired balance, deteriorating function. That language is accurate, in a narrow sense. But it describes my life only in terms of what is disappearing.

It says nothing about who I am. It says nothing about what I know, what I’ve built, what I care about and what I contribute. It frames the future as a series of further deficits, and frames me, essentially, as a disease in progress.

What Sinclair’s essay gave me was a way to name what feels wrong about that framing. The problem isn’t acknowledging that Parkinson’s is real, or that it brings genuine difficulty. The problem is when the deficit becomes the whole story. When I become the deviation. When the person, meaning the one living this life, making sense of it, finding meaning in it, disappears behind the diagnosis.

We can do better than “lacking in Y.” We can start by asking: what kind of support does this person need, and what kind of support can they give others? What are they capable of, when given the right conditions to thrive?

I don’t want to be mourned for what I’m losing. I want to be met as who I am.