How to treat a person with disabilities as a person (and "treat the person, not just the disease")

Acknowledge their perspectives and listen to their stories.

I recently heard a doctor, Tod Worner exhort that health care providers have a duty to “treat the patient, not the disease.”

I agree.

What does that mean?

Specifically, what does that look like? How can you tell if a doctor you’re observing is “treating the patient?” If you yourself are a doctor, how can you evaluate your own behavior?

It might seem like common sense to “treat the patient,” but like much of common sense, it seems to be hard to apply in practice. I talk to many people with chronic illnesses who feel dismissed by their health care providers. A dear friend, whose symptoms were too serious to deny, felt dehumanized by legions of intellectually curious, but emotionally remote, doctors. Clearly, some health care providers have a lot to learn.

Tod’s question can be broadened into, “how can we treat people with disabilities like people, not just collections of symptoms or chemical reactions?”

In this post, I will give you my best answer.

What it means to treat someone “like a person”

While many scientifically-minded people believe that humans are fundamentally nothing but a complex set of chemical reactions and physiology, no one wants to be treated as such.

We may not be able to explain why, but we all know when we’re being dehumanized. People with disabilities do, too, no matter how low their IQ may be. Most people are rarely treated like collections of chemicals, and only in specific situations, such as in the doctor’s office. By contrast, people with disabilities experience it often, everywhere, in small or large ways.

Warner describes a patient with severe movement difficulties who uses a wheelchair, has difficulty caring for herself, and lives in a group home. She told him,

“People look at me like a vegetable but I’m not. I’m really smart.”

So, how do we treat people like people, not vegetables?

Tod Warner’s lessons for how to treat patients like people can be summarized as follows:

1. Be alert. Pay attention to each person’s complexity and individuality.

2. Be careful. Respect their autonomy.

3. Most importantly, “give a damn about the patient.”

To me, #3 is the most important — and utterly necessary.

(Though not sufficient—I could write a whole post about that).

“We must fundamentally give a damn about people and their stories.”

-Tod Warner

Here’s what makes living humans more than just meat made of chemical reactions.

People experience things. They think, they feel, they suffer.

Each individual person has a unique experience. That makes each person infinitely precious, but also lonely, yearning to bridge the gap between their own experience and others’.

Thus, people yearn to be seen and heard.

Most of all, people have stories. Stories are how we make sense of our own experience and try to share it with others.

Being Human Means Having a Story

When we ignore people’s stories, or deny them the chance to tell their stories, we dehumanize them.

No one knows that better than autistic people.

It’s hard to overstate the absence of autistic people’s stories from public life in the 1990’s-early 2010s. (I can’t personally speak about earlier decades. My perception is that autistic people were more visible and widely known in the 1990s-2010s than before, but not more heard).

Autistic people told their stories in a few blogs and conferences, which were invisible to the mainstream world. However, their perspectives were absent from the mainstream media, most of the internet, doctor’s offices, schools, therapist’s offices, everyday conversations between neurotypical people, etc.

It was hard for parents to find information about how to help their children, much less about how their children saw the world. Few autistic people had published their stories or advice books yet. The best known —Temple Grandin’s Thinking in Pictures, Tony Attwood’s books, John Elder Robison’s Look Me in the Eye — were not the most emotional books.

Meanwhile, researchers questioned whether autistic people had good enough autobiographical memory, language skills, or social motivation to tell their own stories at all.

Imagine being an autistic person listening to people saying such things about you. Epistemic invalidation hurts. Or listen to Remy (formerly Melanie) Yergeau’s outcry embedded in an academic paper (2013).

This was the world in which I became aware of autism, and was diagnosed with ADHD myself. I immediately saw that autistic people were being dehumanized and denied a place at the great conversation of human social life.

I knew it was wrong. And I began working with autistic people to change that.

Being Human Means Having a Perspective

Meanwhile, I’m continually astonished, and deeply hurt, how few people ask me why I do things. Because I think, perceive, and act differently than most people, I often confuse or frustrate other people — yet they don’t ask why.

In so doing, they don’t just fail to ask about my story. They fail to ask about my perspective.

Yet, normally, we assume that people do things for reasons. That assumption often leads us to ask questions.

So, when people don’t ask about my perspective and motivations, especially if they would normally ask a neurotypical person, I feel dehumanized.

It happens all the time. It wasn’t just the neuropsychologist who diagnosed me. He wrote a long report that was utterly wrong each of the few times it stated what I thought or felt. It’s hard to read, even now. His account disappointed me, but at least it fit my expectation that diagnosticians can reduce people to collections of symptoms.

The problem was, everyone often failed to ask — teachers, acquaintances, even family.

That may surprise those who know me personally. I am hyper-verbal and intensely chatty, with a massive vocabulary. I have a penchant for telling stories and talking about thoughts and feelings. Within moments of interacting with me, it becomes obvious that I can tell my own story and explain my own perspective. The neuropsychologist even got a sample of my ability to do so in writing.

I’m clearly capable of answering, yet no one thinks to ask.

If that’s how the world treats me, imagine how they treat the majority of people with disabilities, who are seen as less capable of explaining their experiences and telling their stories.

Imagine what it must be like to be a person labeled “low functioning.”

Internal vs. External Perspectives on Disabilities

There are 2 fundamentally different ways of looking at a person with disabilities: from an “internal” or an “external” lens.

(Credit where credit is due: I’m not the first person to say something like this. The late Mel Baggs talked about this distinction in the context of “autiebiographies,” and I think Kit Mead has too, discussing fiction about autistic characters. I’m developing the idea and applying it to health care in the United States).

Unfortunately, the health care system does everything possible to remove internal perspectives, because they are messy and “unscientific.”

For certain purposes, such as diagnosing disabilities, that type of objectivity works. However, when it carries over into how doctors interact with their patients, patients can feel dehumanized.

External Perspectives

The DSM, of course, is a good example of an “external lens.”

It’s a description of behavior, which aims to get as close to objectivity as possible. It was written to be applied as consistently as possible, so that clinicians will make the same judgments as often as possible—no matter how different their training, practice location, or patient SES (or other variables). It reduces subjective judgments as much as possible to achieve greater internal consistency and applicability.

The DSM mentions “Hyper- or hyporeactivity to sensory input” but does not describe what that feels like. It mentions “highly restricted, fixated interests that are abnormal in intensity or focus”, but not how good it feels to pursue them. It discusses “insistence on sameness,” without providing reasons someone might behave this way.

There are consistent themes in the life stories of people with particular conditions (such as depression or autism), but the DSM doesn’t mention stories at all.

In short, the DSM is not “relatable.”

However accurate a DSM diagnosis may be, nobody sees themselves the way the DSM describes people.

Nor should they. That way leads to mental illness.

Internal Perspectives

By contrast, look at Julia Bascom’s groundbreaking “The Obsessive Joy of Autism” (2011). It roughly aligns with the DSM-5 describes as “highly restricted, fixated interests that are abnormal in intensity or focus,” yet it describes all the experience and motivations missing from that description:

“Sometimes being autistic means that you get to be incredibly happy.

…It’s not just that I am sitting in my room and my heart is racing and all I can think about is Glee and all I want to do is read about it and talk about it and never go to sleep because that would take time away from this and that has been my life for the past few days. It’s not just that I am doing sudokus in my head or that I find ways to talk about either numbers or Glee in any conversation, including ones about needing to give a student a sensory break so he’ll stop screaming and throwing things.

…the experience is so rich. It’s textured, vibrant, and layered. It exudes joy. It is a hug machine for my brain. It makes my heart pump faster and my mouth twitch back into a smile every few minutes. I feel like I’m sparkling. Every inch of me is totally engaged in and powered up by the obsession. Things are clear.

It is beautiful. It is perfect.

…Being autistic, to me, means a lot of different things, but one of the best things is that I can be so happy, so enraptured about things no one else understands and so wrapped up in my own joy that, not only does it not matter that no one else shares it, but it can become contagious.

…I pity anyone who cannot feel the way that flapping your hands just so amplifies everything you feel and thrusts it up into the air. I pity anyone who doesn’t understand how beautiful the multiples of seven are, anyone who doesn’t get chills when a shadow falls just so across a solitaire game spread out on the table. I pity anyone who is so restrained by what is considered acceptable happiness that they will never understand when I say that sometimes being autistic in this world means walking through a crowd of silently miserable people and holding your happiness like a secret or a baby, letting it warm you as your mind runs on the familiar tracks of an obsession and lights your way through the day.

… we feel joy—sometimes a joy so intense and private and all-encompassing that it eclipses anything the world might feel.

[Re-consider]…the tired old image of a little professor cornering an unsuspecting passerby and lecturing them for half an hour. …I’d like to invite you to see through the eyes of the lecturer, who is not so much determined to force their knowledge into you as they are opened to a flood of joy which they cannot contain.

And why would you want to contain something like that?”

It’s not just the positive perspective that resonates with people, although that means a lot.

It’s also the humanness of this description.

Countless parents have said this description helped them understand their child better, in a way that no one says about the DSM.

As a person with lifelong intense, specific interests, this essay evokes my own feelings. Reading it, I feel seen, understood, and comforted.

If you don’t have intense, specific interests yourself, this essay teaches you something about what it would be like to have them. It works in the same way that a novel can teach you what it’s like to be a different age, sex, gender, or from a different place and time.

That’s why so many people seek out TikTok videos where people tell stories about how they experience life with autism, ADHD, and other disabilities. That’s why so many watchers wonder if they have the same disabilities: unlike the DSM, these videos present portraits of disabilities that are human and relatable.

Mosaic of Minds’ 5 Steps of Treating Disabled People like People

Following Tod Warner, I’d like to give you my own set of rules for treating patients, not just their conditions, and interacting with people with disabilities, not just their deficit.

1. First, “give a damn” about each person and their story.

2. Second, listen. If what they say contradicts your assumptions, let their information replace these.

3. Ask questions about their perspectives and motivations.

4. Reflect back, in your own words, the story they tell you. It shows you recognize they have a story, and that you hear and see them.

5. Do not co-opt the right to tell a person’s story, as if you were that person. Doctors sometimes unintentionally “speak for” their patients like this, as the neuropsychologist who diagnosed me did, and it infringes on patients’ humanity.

To “treat the patient, not the disease,” you must learn, as much you can, what it’s like to be that patient. That means knowing what it’s like for that person to have their disability or disease.

No matter how many people with that disease you have met, you must pay close attention, because everyone has a different perspective on their own disease.

You must know what it feels like to them to have those symptoms.

You must know what it feels like to lose abilities you took for granted, as in an acquired disability. And you must know how fundamentally different that suffering is from what it’s like to have a lifelong disability, never having that ability in the first place.

You must know what it feels like to be a patient in your office, surrounded by gatekeepers and barriers you’ve gotten used to, and may not even notice.

You must understand the isolation and dehumanization your patients may face — how often it happens and how awful it feels.

You need not explicitly discuss these matters with the patient, although doing so might help them feel seen and trust you more. However, your understanding will come out in how you interact with your patients, and they’ll feel the difference.

Now go out and make someone’s day a little better by treating them like a person.

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What do you think?

If you’re a doctor, how do you “humanize” your interactions with patients? If you’ve been a patient, how do you *wish* your doctors would treat you?

Often, we dehumanize people without thinking, in small ways, or because of what we fail to do (such as when we fail to ask people with disabilities for their perspectives or reasons). How can we all better treat people with disabilities as people?

Hit the button below and share your thoughts!