POST 10 — What Happens When We Stop Trying to Make the Person Fit?
Educational Series — Posts 6–10
POST 10 — What Happens When We Stop Trying to Make the Person Fit?
System design | Individualized care | Human dignity
For more than two decades, I’ve watched people try to fit my son, Alex, into categories that cannot adequately describe him.
A spinal cord injury category.
A ventilator-dependent category.
A quadriplegia category.
A developmental disability assessment.
A nursing task list.
Each describes something about Alex.
None describes everything.
Alex sustained injuries involving the cervicomedullary junction, brainstem, and upper cervical spinal cord.
He has profound physical dependence.
He is cognitively intact and directs his own care.
He uses a diaphragm pacer as his primary respiratory support.
He has unusual autonomic responses that require individualized understanding.
And he has lived successfully in the community for more than two decades.
But when systems encounter someone whose needs exceed their usual categories, the response can become an effort to simplify the person.
Find the closest box.
Check it.
Apply the standard process.
Move forward.
Yet what happens when the person doesn’t fit?
Sometimes the response seems to be to push harder.
More standardized questions.
More documentation.
More administrative steps.
More assumptions about what should work.
Meanwhile, the individual and family may be explaining, repeatedly, why the standard approach is incomplete.
This is where I think we need to change our thinking.
A good system needs standards.
It needs accountability.
It needs consistency.
But it also needs the ability to recognize exceptions, examine evidence, and adapt when the standard approach doesn’t capture reality.
Otherwise, the structure designed to support people can become an obstacle to understanding them.
We shouldn’t measure success by how successfully we make someone fit a category.
We should measure success by how well we understand and support the human being.
Because Alex’s challenge is not self-direction.
It is self-execution.
And the support he needs should reflect that distinction.
Don’t force the round person into the square box.
Change the box.
Not because standards don’t matter.
But because people matter more.
#ChangeTheBox #PersonCenteredCare #DisabilityRights #HCBS #IndividualizedCare #DisabilityAdvocacy #BeyondTheCheckbox #StabilityIsNotSimplicity
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