When the Category Becomes More Visible Than the Person
One of the greatest challenges facing healthcare and support systems today is not whether categories exist.
Categories are necessary. We know healthcare, research, insurance, and government programs use them.
Without categories, large systems simply could not function.
The problem begins when the category becomes more visible than the person.
Recently, I was reminded of a conversation about a young woman living with a high spinal cord injury.
Someone remarked that she “wouldn’t let the nurses do what they needed to do.”
But I’ve thought about that statement differently.
What if she wasn’t resisting care?
What if she was trying to protect the individualized care that years of living in her own body had taught her was necessary to remain healthy?
That is a very different story.
People living for years—even decades—with complex medical conditions often become experts in their own physiology.
They learn:
- what protects their skin,
- what causes problems,
- how their body responds,
- what has already failed,
- what subtle warning signs matter,
- and what keeps them healthy.
They are not rejecting professional expertise.
They are contributing expertise that only they can possess.
The conflict is often misunderstood.
It is not necessarily:
The individual versus nursing.
It is:
The individual’s lived expertise versus a generalized model of care.
Those are not the same thing.
The presence of nursing does not automatically mean the care matches what the individual actually needs.
The presence of support is not evidence that the support fits the person.
Perhaps a better way to think about it is this:
The individual doesn’t need someone to decide what their category requires.
They need someone who is willing to ask:
“Help me understand what you need, and then let me competently help carry it out.”
That is not less professional.
I would argue it is more professional.
Because it begins with assessment of the actual person rather than assumptions about the category.
Categories are valuable, but they do not tell us everything.
A category cannot tell us:
- what this particular person’s body has taught them,
- what previous complications revealed,
- what routines keep them healthy,
- what subtle signs precede a crisis,
- or what years of lived experience have demonstrated.
The category introduces the person.
It should never replace learning the person.
That realization has led me to think about another phrase we hear often:
Person-centered care.
Person-centered care has been an important advancement, and it should remain so.
But perhaps it also needs to become person-informed.
Person-informed care recognizes that the person’s own lived knowledge is valuable clinical information.
It asks not only:
“What does this person want?”
It also asks:
“What must we understand about this person before we decide how to help?”
That shift changes everything.
Instead of beginning with:
“This is what we do for people in this category.”
We begin with:
“Teach me what you’ve learned about your body, your life, and what keeps you well.”
That is what some of the best clinicians we have encountered have done.
Rather than assuming expertise meant having all the answers, they asked:
“What have you found works?”
That wasn’t a sign of weakness.
It was a sign of wisdom.
As medicine advances and more people live long, full lives with complex conditions, I believe this question will become increasingly important.
Not because categories are wrong, but because categories should only be the beginning.
Categories should begin understanding. They should never end it.
And perhaps the greatest responsibility of any healthcare or support system is this:
Never let the category become more visible than the person.
#TheGoalIsLife #LivingNotJustExisting #PersonInformed #Healthcare #Disability #SpinalCordInjury #HomeCare #Autonomy #OneNuggetAtATime
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