In the last two months, I've been in and out of my home
with remodel issues and illnesses. And I've had a chance
to evaluate just how important my home is to me for
survival; it's not just a comfort zone.
Being disabled, a home is more than just a home. No
matter where a person with a disability resides, home is
a haven to stay healthy. Sometimes it's the difference
between life and death.
Some people might think I'm exaggerating, but I'm
not.
My home is set up to accommodate every aspect of my
life. My bed has an overhead trapeze to help me get in
and out and roll over. Most able-bodied people don't
know that when your mobility becomes impaired, you don't
roll over in your sleep anymore. The human body doesn't
suddenly remember what muscles to move to keep you from
developing pressure ulcers. The mind takes over and
wakes you up to roll over.
My closets have lowered rods for my clothes, and I
only use the lower drawers of my dresser.
My kitchen is set up to help me cook, clean and
sustain my family and myself. A simple thing such as the
organization of the refrigerator shelves can make the
difference in eating properly one day to the next.
Cupboards are organized a certain way to reduce
strain and injury. Any disruption in these patterns can
cause me pain, hunger and extreme frustration. Having to
ask for help when you're away from home is hard enough,
but to ask for it inside your home is especially
troubling.
It's important to the self-esteem of the disabled
person that the entire family realizes that a can of a
favorite soup on a lower shelf needs to stay there.
One room that is the most important for my
independence is the bathroom.
Nothing is more humiliating than having to ask for
help when something has been moved or changed, or has
failed to work. During the remodeling of my home, I
lived in a hotel for 11 days. Although the hotel was
wheelchair accessible, it wasn't set up like my home. My
husband had to help me shower, dress and transfer. I
hated it, but I had no choice.
Soon I will be going into a general hospital, the
most inaccessible place for people with disabilities.
Most nurses don't receive training about the needs of
people with disabilities and will not change treatment
plans unless you tell them what you need. I've already
started packing things the hospital won't have.
Semi-private rooms don't have accessible bathrooms
and aren't large enough for wheelchairs. A simple thing
such as having your beside table within arm's reach is a
big deal.
I look forward to the day when I'm home permanently.
For me there really is no place like home.
McKee, a wheelchair user, is a poet and producer.
You can e-mail her at chairgrrl@chairgrrl.com.
Her column runs on Tuesdays.
