Functional, Not Perfect

 Functional, Not Perfect

Over the years, I have learned that one of the most difficult things to explain is the difference between wanting something to be perfect and needing something to be functional.

Those are not the same thing. And frankly, in the world of paralysis perfect does not exist. 

When people hear that Alex hopes to build a custom accessible home someday, they sometimes imagine a wish list.

But that is not what this is about.

It is about functionality.

It is about removing barriers.

It is about creating an environment that actually works for the life Alex lives every day.

Alex sustained a catastrophic spinal cord and brainstem injury when he was six years old. He is paralyzed from the neck down and relies on a power wheelchair, ventilator support, diaphragm pacing, adaptive technology, and extensive physical assistance.

When we were forced to leave our previous home, finding housing that would work for Alex was incredibly challenging.

We tried to explain the importance of things like a covered ramp or protected access to transportation.

At times, it felt like those requests were being heard as preferences.

As though we were asking for something “perfect.”

What we were trying to explain was functionality.

Because for Alex, getting from the house to the van is not the same as someone walking across a driveway.

There is a large power wheelchair, with a vent tray on back which hold a ventilator and humidifier. 

We have to be concerned about the weather conditions, not just for Alex, but for his equipment. 

A person who cannot independently react if something suddenly goes wrong.

Rain, snow, ice, wind, or extreme temperatures affect much more than comfort.

The current home has served us well in many ways, and we are grateful for it.

But it was not designed around someone with Alex’s level of physical disability and medical complexity.

Because of the size of his wheelchair and equipment, many areas of the home are difficult to access efficiently.

As a result, Alex spends much of his time in his bedroom—not because he wants to be isolated, but because that is the area of the house that functions best for him.

That distinction matters.

The issue is not Alex.

The issue is the environment.

There is also only one practical accessible exit from his bedroom.

For most people, that may not sound significant.

For someone who cannot physically get himself out of bed, transfer independently, or evacuate without assistance, it matters a great deal.

A future home would not be about luxury.

It would be about functionality.

It would allow Alex to access all areas of the home.

It would include adequate space for his wheelchair, equipment, and daily activities.

It would provide protected access to transportation so that loading and unloading could occur safely regardless of weather conditions.

It would include multiple accessible exits in the event of an emergency.

It would include a fortified safe room for severe weather.

It would be designed around how Alex actually lives rather than requiring Alex to constantly adapt to a space that was not designed for him.

Most importantly, it would remove barriers.

And removing barriers changes things.

It creates greater independence.

It creates greater participation.

It creates greater safety.

It creates peace of mind.

It allows energy to be spent on living life rather than constantly working around obstacles.

One of the most important lessons I have learned through disability is that many limitations are not solely caused by a person’s injury.

Sometimes they are caused by the environment.

A narrow doorway.

A poorly placed wall.

An inaccessible bathroom.

A lack of safe exits.

A transportation barrier.

An inaccessible community space.

These things create disability too.

When barriers are removed, people can participate more fully in the lives they choose.

That is the goal.

Not perfection.

Not luxury.

Functionality.

Because the purpose of accessibility is not to create something special.

The purpose of accessibility is to create an environment where a person can safely live, participate, contribute, grow, and pursue the life that matters to them.

For Alex, that is what a future home represents.

Not a dream house.

A functional house.

A house that allows him to more fully engage in the life he directs and values.

And there is a very important difference between those two things.

#TheGoalIsLife