How We View Individuals Matters
THE WAY WE VIEW PEOPLE AFTER CATASTROPHIC INJURY CHANGES EVERYTHING
One of the most important things I have learned over the years caring for my son Alex is that the way society and systems view a person after catastrophic injury profoundly shapes the life that person is then allowed to live.
That realization has become impossible for me to ignore.
Alex once said something to me that stopped me in my tracks:
“You have the right to life, liberty, and the pursuit of happiness…unless you get injured.”
Technically, of course, those rights do not disappear after injury.
But Alex was identifying something very real.
After catastrophic injury, people are often treated differently in ways that go far beyond medical care itself.
The way systems interact with them changes.
The assumptions about them change.
The expectations for their lives change.
The level of autonomy they are allowed to exercise changes.
And sometimes, the very framework through which they are viewed changes.
A person who once directed their own life can gradually become viewed primarily through:
• tasks,
• risks,
• staffing needs,
• hours of care,
• equipment,
• diagnoses,
• and system limitations.
That shift can happen quietly.
And once it does, the individual risks becoming managed instead of supported.
That distinction matters enormously.
There is a profound difference between:
• helping someone physically accomplish what their body can no longer independently do,
and
• taking over the person’s life, choices, priorities, and ability to direct their own existence.
Alex and our friend Scott both illustrate this issue clearly.
Scott sustained a catastrophic C3 spinal cord injury as an adult. Before his injury, he held a prestigious professional position and earned a very high income. After his injury and subsequent divorce, his only realistic insurance option became Ohio Medicaid.
Now, despite remaining cognitively intact and fully capable of directing his own life and preferences, he must continually fight systems to obtain enough support simply to live safely and meaningfully.
The system often approaches him through the lens of management:
determining hours,
determining staffing,
determining what level of support is “sufficient,”
and making decisions about how his life should function.
But Scott does not primarily need someone to manage him.
He needs appropriately trained hands available to help him physically accomplish what he cannot physically do independently.
That is an entirely different concept.
The same is true for Alex.
Alex does not “need” someone to decide whether he is allowed to stand long enough to support his bones, circulation, joints, respiratory function, and overall health.
He does not “need” someone deciding whether stretching, electrical stimulation, positioning, respiratory support routines, or movement activities are worthwhile parts of living.
He needs physically capable support to help him do the things his body still benefits from doing.
There is an enormous difference between:
• supervising a person’s life,
and
• supporting the person in continuing to live it.
That distinction becomes especially important for medically complex individuals who retain full cognition, self-awareness, preferences, communication, intelligence, and the ability to direct their own lives despite severe physical dependency.
Physical dependency does not equal cognitive dependency.
A person may need extensive physical assistance while still fully remaining:
• intellectually present,
• emotionally present,
• relationally present,
• spiritually present,
• and entirely capable of participating in decisions about their own life.
Yet systems can unintentionally begin treating physically dependent individuals as though dependency itself justifies loss of autonomy.
That is one of the deepest concerns I have developed over the years.
Because medically complex individuals are not simply “bodies in beds.”
They are human beings:
• with identities,
• relationships,
• goals,
• preferences,
• personalities,
• dreams,
• humor,
• faith,
• intelligence,
• and meaningful lives still being actively lived.
The goal of support should not simply be survival.
The goal should be helping the individual continue living as fully, safely, meaningfully, and autonomously as possible.
That requires a fundamentally different framework.
Not:
“How do we manage medically complex bodies?”
But:
“How do we help medically complex human beings continue living fully human lives safely, meaningfully, and with dignity?”
Once that becomes the guiding question, many other things begin to shift:
• care models,
• staffing approaches,
• communication,
• priorities,
• environmental design,
• interpretation of risk,
• and even the definition of success itself.
Because success is no longer only:
• preventing crisis,
• completing tasks,
• or maintaining survival.
Success also becomes:
• participation,
• connection,
• growth,
• stability,
• autonomy,
• purpose,
• meaningful relationships,
• and quality of life.
The purpose of home-based support should not be to recreate institutional life inside someone’s home.
A home is supposed to remain a home.
The goal should be helping the person live.
And living includes:
• family connection,
• belonging,
• participation,
• routines,
• emotional well-being,
• growth,
• self-direction,
• joy,
• and meaningful involvement in life itself.
When systems become too focused on tasks, risk management, and minimum survival standards, the “living” part can slowly disappear.
And that is when a person risks becoming reduced to:
“the body in the bed.”
That is not true person-centered care.
True person-centered care asks:
“How do we preserve this person’s humanity, autonomy, dignity, safety, identity, and meaningful participation in life while supporting the extraordinary physical realities they now navigate?”
That is the conversation I believe we urgently need to continue having.
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